will power and justin wilson interview in preview of surfers paradise indycarnival 2007

tribute to 2018 indy 500 winner will power and the late gentle giant of open wheeler racing justin wilson. a wonderful guy taken from us too soon. will used to come periodically to help co host my sports radio programme on the abc australia and having justin there was a special treat. i decided to just sit down and three of us just shot the breeze about motorsport. will used to say he enjoyed coming on the show as we knew a hell of a lot more about motorsport than our competitors. we just relaxed and turned the recorder on and ended up with some rubbish, a lot of gold and a relaxing half hour for the boys. obviously i tidied it all up for broadcasting but this is just us raw. i think both deserved to be uncut so you can year what great guys they are. cheers darren madigan. thanks to indianapolis monthly for the pic of will power this content is not monetised in any way. i am terminally ill and it is part of my legacy as a broadcaster.

https://youtu.be/G6pJJDa3wSU

sports seggy on Ash & Jake's brekky show on the mighty RebelFM 17 april 2018

https://www.youtube.com/watch?v=jkh2cEnmLy0&feature=share

2017 (for those who aren't on my facebook and have read it already)

As I promised before Xmas I will be thanking some individuals whom without their generosity of both spirit and financially I probably would have had to make some awful decisions regarding medication and food etc. I will be doing this shortly but I may be a touch slow as to put it bluntly medically I am not doing so well right now. Nothing can be done so I am trying to ride it out the best I can. So for now a general heartfelt thank you to everyone who has helped this year.

This time last year I was both mentally and physically exhausted. I have had to deal with my body screaming genuine life and death problems at me for 15 years now and the bottom line is no matter how tough you are sooner or later the sheer tiredness and exhaustion of it all takes its toll. Every procedure involves being cut open and things either get ripped out or put in. I gave up counting after number 35 lol.

Frankly I was ready and at peace. It was time for it all to end. I was ready to die.

I somehow made it through xmas and one night early in the new year I let it all out in a conversation with a couple of friends. My belief in humanity had completely gone and I just wanted it all to end.

After a few days of pouring my heart out on the phone as I had had enough of seeing people with little need getting government assistance and I couldn’t even get help for a scooter to maybe pay off as I could barely walk by now. Kerri Robertson and my high school friend and love Samantha got together and set up the assistance page. A wonderful gesture that I certainly did not expect or ask for. As those who are close to me are now aware I kept my mouth shut as to how bad things were for over 10 years.

I took great pride in being the tough guy and realising that I could genuinely look at a cancer patient and if they were complaining about their lot in life I could easily look at them and say “wanna swap?” as I knew exactly what I was talking about for reasons I wont go into in this post.

The generosity of certain individuals and organisations I will go into in subsequent posts but the way things are at the moment it is not my state of depression that is part of the issue it is my body has now had enough. If my body matched my mind right now I would be in a wonderful place. The love and gratitude I feel right now unfortunately cannot be matched by my body which genuinely has had enough and the bloods and prognosis show a very grim outcome.

But you know what? That’s ok. Because over the course of 2017 I discovered my faith in human decency all over again. I have come to realise who my real friends are and no its not about who gave the most financial help although I know I would not have been able to survive without it.

I’m talking about people who when coming up to north queensland on holidays actually made the effort to call and arrange a meet up. Whether it was them coming to see me or me travelling to cairns to catch up it meant the world to me. They made no excuses they were up this way and made the effort and I will never forget their kindness.

Situations like when I was a silly boy and tried to move a couch and my dear friend Sharon rushed over to find me not knowing where I was due to oxygen deprivation and awful angina. She caught me and held my arm and hand while I gained my senses back as I didn’t know if I was Arthur or Martha. Kerri Robertson had to do a similar thing at the Tolga pub when she and my beautiful heart munchkin her daughter Paige surprised me in May by flying up to surprise me.

So many other instances that I will go over soon but for now by body is saying go to bed. I don’t use the word love in a flippant manner. I never have and for those that know me well they are aware that if I say it I mean it.

Like I said my body has very much had enough and it’s hard to know when it will just shut down but rest assured due to the efforts of a number of beautiful people I will die in a wonderful state of mind and nobody can ask for more than that.

Palliative care……..my thoughts.

Palliative care……..my thoughts.

With all the current talk about assisted dying laws in the state of Victoria here in Australia I thought it was time I put my thoughts to paper so to speak as I come from the point of view of the patient having not only been clinically dead but more importantly having dealt with a year of terminal illness and doing it all again.

The first time around I was lucky in that a donor heart was found with just a very small amount of time left. my organs were starting to shut down and my trips to hospital for tune ups became more and more frequent as kidneys started to fail completely in sympathy with my heart and lungs.

Whilst there was a happy interlude that time around unfortunately this time around is all bad news. Unlike cancer patients I don’t have the luxury of operations or treatments like chemo to save or at least put me in remission I am just going to die. Its just a matter of how soon.

We know that less than half of people in the western world who are diagnosed with a form of cancer actually die because of it.  Its in the 30’s in terms of percentages here in Australia. People who have the ailments I deal with have a 100% fatal outcome. We deal with just as much pain if not more and the treatments at the high end before it is decided nothing further can be done all involve being cut open and have the most horrific options. We learn to lay back and cope because if you don’t have the word cancer in your diagnosis people just don’t care.

I could go on about this but my anger towards the way heart and lung disease is treated compared to the various forms of cancer simply come down to both how funding decisions are made and how the unfortunately uneducated public perceive this very serious problem of lack of funding in the right areas.

For example over the last couple of years my body has started to fade due to my medical issues. I have and continue to deal with the most awful of daily problems that involve enormous amounts of pain, 24 hour a day oxygen at a high rate plus the organs that the diseases affect now fading in their function. People see me starting to feel the effects publicly as I can no longer hide it but for the most part tend to ignore it. During this time however I have developed a form of blood cancer called polycythemia due to my lungs not being able to keep up oxygenating my blood. This is deadly but out of all the deadly things that are wrong with me in some ways it is the least of my worries.

It is telling about the general community and how they perceive the seriousness of certain ailments that as soon as the polycythemia was mentioned in my posts that everyone started to show enormous concern. The classic “oh no you haven’t got cancer have you” closely followed by the equally irritating “thoughts and prayers” are with you. The fact that the far more serious heart and lung issues didn’t matter to them but that they only heard the word cancer is telling about how we perceive things in current society and it is not good.

The fact that people who have no qualification (and I include most medical people in this) are allowed to decide whether someone should be allowed to make their own decisions on life and death is frightening. As the patient and the one going through this living hell with constant all over body pain from the things mentioned above plus various forms of rheumatologic issues plus a very painful abdominal hernia that cannot be operated on due to the fact that I can no longer undergo general anaesthetic I simply see so called medical professionals that are overwhelmed when they see everything I have to deal with and cannot understand how I continue.   

Due to the discussions on voluntary euthanasia and the potential for laws being passed in Victoria, Australia I feel I am qualified to speak on this subject far more so than my former colleagues in the broadcast media and the so called experts they bring in to talk to.

The right to choose how and when we die when faced with terminal illness is a fundamental human right. You have no business deciding how I can live or die.

Here in Australia we have a federal health minister but out health system just like our law enforcement is broken up into what are effectively state run branches. To say they are a mess is an understatement but that discussion is for another time.

I live in the state of Queensland. The most spread out population and the only state where more people live outside the capital than within it. The system is falling apart here with doctors on a large scale having little in the way of empathy for their patients. When I was waiting on the possibility of a second heart transplant it was made clear to me by a doctor that I should watch what I say as she had been in committee meetings where it had been a deciding factor in whether patients got an organ or not. They will of course deny this but given what I have endured with certain other Queensland Health medical professionals I believe her.

I always say that the phrases “Queensland Health” and “pain relief” amount to an oxymoron. In the last 10 years I have not had a hospital stay where my pain relief has been taken care of. I am a big guy who soaks up meds like they are lollies. That is just the way my body deals with them. Am I ever listened to? No!

Back in 2012 I presented at Redlands Hospital in Brisbane with a particularly bad episode of gout with the skin breaking on my big toe to allow whatever was inside to come out. I was treated by an middle aged doc who could see I was in agony and he organised for my pain relief. I knew the drug and I knew the dosage well and this would have done the trick so I could go home and get his script filled. After he walked away the Slavic female doc with him looked at me and said I didn’t need it and halved my dosage and you guessed it I was in agony. This is the younger generation of docs and nurses coming through the Qld system right now.

The main aspect of palliative care that most patients care about is the loss of pain relief and dignity. Unfortunately Queensland Health have failed dismally in this area and are forcing patients to take matters into their own hands. if you or a family member have had a positive story to tell i don't care. Mine and others incredibly negative experiences are far more important as change needs to happen and patting these fools on the back means more people die in agony and without dignity.

If I choose to die at home at a time and way of my choosing that does not endanger anyone else then what business is it of yours.

It isn’t!

Despite what many doctors and nurses may tell you in this field there does come a time in a great many of cases where the pain killers don’t work anymore and as far as the patient is concerned (and frankly that is the only opinion that matters) there is too much of a loss of dignity too bear.

Why should the patient have to wait that long and start begging and then still get told no! Just because a few people may slip through the system does that mean the vast majority of those of us in this situation should die in agony because of some idiot's right wing beliefs?

I have one thing to say to Qld Health and the Palliative care people who are trying to save their jobs.

Bugger off and stay out of my death!

Update 8 September 2017

Update time: well with footy finals gone, most important thing on bucket list happening and Bathurst (congrats to David Reynolds) out of the way now is as good a time as any for an update.

Straight up as always things are getting harder with nothing easing angina pain but time now. Oxygen now required for any form of exercise and by that I mean simply standing up. Now showering etc with oxygen. Good stuff this oxygen lol. Have now asked a friend to contact some of you when the time comes about wake details and he will along with another couple of dear friends contact everyone through social media.

Bottom line is I have been dead 3 times and this is the second time I have had to deal with terminal illness. The first time I was lucky and received a transplant but this time there are no treatments or ops that can stop it. The most important thing right now is to drag it out as long as I can but once again that can only be controlled to a certain level by attempting to ease symptoms. So all I can do is fight the pain take as many blood thinning stuff that I can to hold off thickening blood from the polycythemia from causing more heart attacks and try to hold off the inevitable as long as possible. Unfortunately when you are on your second heart your options are far more limited than when you have your original heart. Its also no fun living through the whole death and terminal illness thing when you have already done it once before and know what’s coming.

Today is dday for my immunosuppression medication with one of my primaries being halved from today for the first time in many years. The real scary bit is that the doctor that has ordered it has an awful record with my meds. In fact I have been correct and he has been wrong on numerous occasions about various important things since 2011 when I first encountered him. Let the games begin.

Luv yaz awl lol

D xoxoxo

Darren madigan segment on rebel fm breakfast with ash & jake 5 april 2017 with thanks to RebelFm

Darren madigan segment on rebel fm breakfast with ash & jake 5 april 2017 with thanks to RebelFm

first segment back on the radio

first segment back on the radio with thanks to Ash &Jake  from RebelFM. please credit RebelFM if sharing.

cheers

Darren

Blog update 8 March 2017

Blog update 8 March 2017

To get started i'd just like to say RIP and my condolences to an old school friend and his family. Alex Mynett and his young family. these things are awful and as someone who knows first hand about life and death in my own body and my family nothing really prepares you. :(

Well i had my latest clinic with the thoracic (lung) specialist and as expected it was decided to double my dose of oxygen from 2 litres to 4 litres per minute 24 hours a day. Hopefully this will help me with a bit of comfort not only from a painkilling help with angina but the obvious breathing help.

For the moment he has decided not to start vampiring my blood because of the polycythemia. When my hemoglobin level exceeds 200 the heart doctor and himself will need to talk. 

Was interesting to see that the various specialists still had not communicated satisfactorily as he was not aware of a few crucial things when i arrived. Nothing unusual there we are talking about Queensland Health after all lol. 

So to put it bluntly the bad stuff is getting worse and the good stuff (well there might be some) is relatively stable. Cholesterol isn't too bad. :) Well i gotta find a positive somewhere right lol. 

Just another hugely important reminder as we come to the end of the gofundme campaign https://www.gofundme.com/restoring-darrens-dignity i want to thank those who have donated or shared the page on facebook or both i thank you with everything i have and will be in touch. for those that have not i also thank you as i have learnt a lot about life. xoxoxo D

Also thank you to those who have been working behind the scenes with Kerrie to mate it all happen it is HUGE! :) 

For those keeping score here is the list once again lol (hey you gotta laugh right? even when you are karking it :) )

Terminal Heart Transplant Vasculopathy (formally chronic rejection). untreatable

Lung disease requiring 24 hour oxygen therapy

Polycythemia (a form of blood cancer) 

Thyroid removed now treated with thyroxine and liothyronine 

Massive abdominal hernia causing constant pain cannot be operated on due to not wanting to have me under general anesthesia. 

General heart failure

Gout in ankles, big toes and hands

Tenosyavitis in wrists and hands

Rheumatic pain and arthritis pain all over especially heels and toes

Hypoxic brain injury after being dead and revived after 20 minutes down. 

Take care everyone xoxoxo

Darren 

Blog update 25 February 2017

Blog update 25 February 2017

Well for those who wanted a medical update i did promise so here it is. Yesterday was a stormy day here in paradise and driving down the mountain to cairns i experienced oil all over the road for the first time in 30 odd years of driving up and down this road. Having a 2008 front wheel drive Lancer sliding all over the road is not my recommendation for waking up in the morning on your way to your first appointment lol.

Bloods came back and my results are mostly stable for the moment. The bad stuff is bad and the normal results i will keep trying to make better. Hemoglobin was 184 and treatment for Polycythemia tends to start at 200 so we will hold off on that at the moment. 

I was carrying a few extra kilos of fluid which he was not happy with as my heart failure was worse and showing symptoms because of it.  I was terribly out of breath while he was examining me. he will now work with my lung doctor to see where it all takes me next but he is extremely concerned at the path my lungs are taking and believes that more lung issues will raise their ugly heads soon. not the most comforting thing to hear but none of this whole roller coaster ride lasting the last 15 years has been. 

I continue to deteriorate despite the relative stability of that slide. 

The Gofundme https://www.gofundme.com/restoring-darrens-dignity page which my dear friends Kerri and Samantha have set up has shown me that people out there that do care. Not necessarily because of donations (which are greatly appreciated) but due to the amount of people who have expressed how much they care which means the world to me. Donations of money were a total surprise and not something i have ever sought but if i am able to get the electric scooter and a van to put it in it will make my life more comfortable as the end comes. Apart from the diseases the all over body pain is agonising and made worse when i have to assemble and disassemble my manual wheelchair which is getting harder and harder to push around. The pain killers only periodically do the job so i find myself in bed a great deal of the time and this is no way to live life.

I cannot thank Kerri and Sam enough and to all of you who have donated or expressed their support i will be forever thankful xoxoxo.

for those who have been asking here is the list of nasties:

Terminal Heart Transplant Vasculopathy (formally chronic rejection). untreatable

Lung disease requiring 24 hour oxygen therapy

Polycythemia (a form of blood cancer) 

Thyroid removed now treated with thyroxine and liothyronine 

Massive abdominal hernia causing constant pain cannot be operated on due to not wanting to have me under general anesthesia. 

General heart failure

Gout in ankles, big toes and hands

Tenosyavitis in wrists and hands

Rheumatic pain and arthritis pain all over especially heels and toes

Hypoxic brain injury after being dead and revived after 20 minutes down. 

phew there is other stuff but i'm tired lol

I think that is enough nasties for ten people especially given the top 3 will kill you and are. 

Once again thank you to those who have expressed how much they care.

As the great philosopher Hawkeye once said "I'd like to say i love you all but i can certainly say i tried to love as many of you as i could". 

:)

D

xoxoxo 

overwhelmed by the generosity. please share if you can.

Thank you FOGS and sports writing living legend Wayne Heming. this is awesome!

AUCTION

In honour of our sports loving Darren and with huge thanks to Former Origin Greats Queensland (FOGS), we are auctioning this fabulous jersey...

The 2016 State of Origin Series reconfirmed Queensland's dominance in the State of Origin arena. With 3 debutantes added to the star studded Queensland team, the Queensland Maroons took out their 24th series win and once again cemented their place in Rugby League History with the 10th series win in 11 years.

Winning the series on home soil at the home of Rugby League in Queensland, Suncorp Stadium in Game 2, the series also handed new coach, Maroon Legend FOG#63 Kev Walters, his first series win.

This Queensland State of Origin Jersey is personally signed by each player who represented Queensland in the 2016 Queensland State of Origin Series - Game One!

Bidding starts at $500 and this awesome piece will go to the highest bidder! Share this auction with all your contacts and work colleagues!

ANY LOYAL QUEENSLANDER WILL WANT THEIR CHANCE TO OWN THIS AWESOME PIECE OF HISTORY!

Place your bid in the comments on the gofundme home page.

https://www.gofundme.com/restoring-darrens-dignity

Bidding closes Friday 10th March 2017.

Bidding starts at $500

Blog update 19 February 2017

Blog update 19 February 2017

hi everyone yes its me. my apologies for not commenting but this past week has been more of a struggle than usual. as most of you that know me would know i don't do asking for help but kerri and samantha ended up doing an amazing thing putting this together and i will be forever grateful. its a shame that we live with a system that has failed so dismally down through the years that this sort of thing becomes a necessity. when mobility and breathing become something that is becoming impossible but can be fixed if you have the funds you know the system is broken. most importantly i want to thank those of you that have given to help. i will never forget your generosity and kindness and i will never stop thanking you. as my productivity gets less and less and my health deteriorates its so important to know there are people who care and actually back it up. there is no "beating" this. it is not like cancer where there are treatments and chemo etc. no with this you simply deteriorate and die. that is the reality so it comes down to trying to treat symptoms as they get worse and to be as comfortable as possible until the end. thank you and i will do my best to be in touch again shortly for those who want to know how my health is going. love D xoxoxo

Click here to support Restoring Darren’s Dignity by Kerri Robertson

Restoring Darren’s Dignity Like an old car that needs new life, Darren Madigan needs a little TLC. He needs restoration of his dignity and to re-polish his faith in his…

GOFUNDME.COM

Blog update 22 October 2016

Blog update 22 October 2016

Well a month never goes by without learning things about the human body. More on that shortly.

Lets start with some positive news. After a year of being pretty lonely here dealing with pretty awful medical stuff it was pretty awesome to have some childhood friends make the trip up here and spend a week with me in this part of the world I call paradise. Russell, Margaret and Samantha came up and saw what life is like for me these days. Yes I did try to hide the bad stuff but that is impossible over a few days so yes I needed to take naps etc. they were wonderful even cooking for me. But the most important thing was having them here and lifted my spirits no end.

Steven and Tanya turned up for an afternoon visit a few days later which was great as I hadn’t seen them since last years high school reunion. Having visitors is so important to keeping up one’s spirits and it shows people do still give a damn. When people come into town and can’t be bothered you know if they really are friends or not. As the old saying goes “nobody is ever that busy”.

Ok medical update time.

As you would expect when one has terminal heart and lung disease then the heart and lungs are deteriorating. Unfortunately every new medical problem adds to the serious issues. With proper terminal illness every organ starts to have its own problems and no they cannot get better. That is not how it works. That’s why it is called terminal illness. So heart and lungs are getting worse with breathing and angina attacks deteriorating. My bone and muscle pain is getting worse and can really only be treated with pain killers of increasing strength and dosages.

Now in a previous blog I mentioned briefly that my blood was getting thicker. The upshot of this is due to my lung issues and the lack of oxygen my kidneys are now telling my bone marrow to produce more and more red blood cells. The increase in blood cells means greater mass and therefore thicker. So my haemoglobin levels have been high for the past year and when they reach 200 it will be time for drug treatment and removal of blood regularly to bring the level back down. As of Friday I was 191.

The condition is called Polycytheamia and yes it is a form of blood cancer. As someone who has said that he would swap places with a cancer patient in a heartbeat given what I have already been through and know what is to come; I stand by that statement. There are much worse things to live with and die from than the various forms of cancer and as a society we need to start realising this and treating patients with real terminal disease who virtually get ignored because there is no “C” word in their diagnosis.

I for one am long over it and yes I do have an intimate understanding of both conditions. 

Over the next day or so i will be putting a bucket list of sorts for mostly my Australian readers to assist in if they can. This is no insult to my international readers its just that i live in Australia and any possible help that may able to be rendered is more likely to come from Australia. 

I am looking to edit as many of my old radio interviews with well known sportspeople and a few entertainers and upload them to my you tube channel as soon as i am able. I am worried there are idiots who may think they have some sort of twisted copyright on my voice so i will fight that if it happens.

More to be uploaded very shortly.

love, Darren xoxoxo  

Blog update 26 August 2016

Blog update 26 August 2016

OK first to some housekeeping. I am still getting back to everyone about birthday wishes. Its taking time but i promise i will and i am about halfway through at the moment.

I have not been in a position to check messages on my phone since the 11th of august. what do i mean by this? Simple i am mostly functional late at night. This is is something i have mentioned many times over the past year but people continue to give me a hard time about not answering their phone calls. If i check my phone messages and don't call people straight back then its more than likely i will forget to call the next time that it is reasonable to call i.e. not 2am. If you send me a message on facebook or email me on sportzscene16@gmail.com i will return your message promptly. If you wish to speak to me on the phone please give me a time and date. And time does not mean "i'll call you in the morning". i am simply not able to wait for hours for someone to call anymore and no there is no "best time to call" anymore. My body simply shuts down now when it has had enough and goes to sleep through exhaustion. For the couple of you that understand this already you know this doesn't apply to you.

For my overseas blog readers i apologise for you having to read this as it obviously doesn't apply to you as none of you call lol.

I now have a computer set up next to my bed. I literally wake up check emails and fall back asleep again after taking my meds. This is my life now. Between the large amount of pain killers and the huge numbers of drugs that are keeping me alive for the moment.

As human beings the truth is our first instinct is to tell someone who is sick to fight hard and think positively.  I wish i could express strongly enough just how irritating this is to most of us. Nobody is more aware of what is required to stay alive than the person who is sick. I know its the default language of people because they are uncomfortable about discussing the subject of death and the sometimes long road towards it but it really is time as a society that we learned to talk about it.

Too many times i have been in situations where people have spent time with me and talked for an hour then left with a kiss on the cheek and a "you take care now". If i look back over that hour, the conversation is almost always about subjects that mean fuck all when the truth is that the person who is sick and actually dying (not the case in the vast majority of cancer patients although you wouldn't know it by the way people go on) really wants to talk about what is happening and small amount of future ahead. Some of us actually do care about legacy and how we will be remembered.

Its too late for me now and frankly since i moved to Far North Queensland most people have shown little genuine interest apart from the occasional social media comment. It is particularly upsetting when people come up to FNQ and even the town i now live in and then even throw up pics on facebook saying what a great time they had but apparently they didn't have 10 minutes to pop in and say hi to their terminally ill friend.

If i had the word cancer in my diagnosis i already know their behaviour would be completely different as they show so in their interactions on social media.

It really is time for society to start to realise that there are far worse things to live and die with than the various forms of cancer. Unless its a really nasty one like pacreatic or bowel cancer most can at least be given years of remission if caught early enough. Terminal heart transplant vasculopathy or failure is 100 percent fatal in itself and also usually comes with horrible other problems that will take you out in incredible pain and drowning in your own lung fluid. Yeah lots of fun. I have actually had friends know about my condition and totally treat it like its not that big of a deal but after making a joke one day about cancer they were absolutely horrified because they thought i might have a form of cancer. Can you imagine how frustrating and upsetting it was for me when for many months after telling that i was terminal with my heart and lungs and they really weren't that concerned but as soon as they thought i had a cancer diagnosis they they were moved to tears with worry. How do you think that made me feel. They didn't care about the thing that was actually killing me but a mystery mistake cancer diagnosis and all of a sudden they cared. We live in a world where it is possible to be smarter than ever in human history yet we are now dumber than ever. Sigh :(

My health is deteriorating at a slow but painful and difficult rate. I have quite deliberately kept information to a minimum and not put pictures on social media over the last few years as quite frankly i didn't wan't people seeing my deterioration. Turning up to my high school reunion in a wheelchair and only being able to stand for short periods of time was something i did simply because i knew it would be my last reunion and i didn't want to miss everyone but the truth is i hated the way i looked that night.

Pictures of myself near death in a hospital bed  are not my idea of fun and i don't intend to start now.

All i would ask is if you are up this way and you have ever thought of yourself as a friend. Are you really so busy that you can't spare 10 minutes for a catch up as it might be our last. Also ask yourself if i have ever not been there for you when you asked me. mmmmm.

There was also what amounted to a death in the family with a close family friend's eldest dying under terrible circumstances after contracting Ross River Fever. He was only 39.

R.I.P. Michael Weston

Ok what's been happening since my last update?

Once again the people i deal with at Queensland Health have shown that they can turn incompetence into an art form. No really i now recognise that it takes real skill to be so inept. Their greatest failing is communications. Having the greatest doctors in the world doesn't mean a thing if you are unable to pick up a phone or send an email. I used to pull people up all the time for using old stereotypes against the Queensland Health workers as the public service jibes were unfair but lately it has become almost impossible to stick up for them when they continue to make blatant mistakes that can put a patients life at risk and continue to do so.

Word of advice for public servants in Queensland Health. You are not in an occupation where you deserve to be put up on a pedestal. When you make a mistake own up to it and take ownership of it and not only will you hopefully not end up killing someone but you will also save yourself from getting sued. Countless studies down through the years have shown that doctors and nurses that take ownership of their mistakes and show the patient and their families genuine remorse rarely get action taken against them however those that try to cover their arse earn the hatred and anger quite rightly of those patients and families. That is where i am and i now feel i have no choice but to finish gathering my evidence and taking action against two inept doctors who are just plain dangerous. Lets make it very clear, there is good and bad in all occupations and health is the same. The major difference is when a doctor stuffs up at the pointy end of medicine or a nurse tries to give medication which a particular patient is not allowed to take but insists even when the patient says no, people die.

Bottom line learn to listen to experienced intelligent patients who know a bad call when they see it.

So.....the Olympics have been and gone and once again Usain Bolt confirmed his greatness as the best track athlete in history. Even though he has said otherwise who would bet against him finally training for the 400m and the long jump lol It was the first Olympics since 1976 that i actually found myself bored watching. Thank goodness European football started a bit early this season :)

I have found myself extremely "down" for the last couple of months with writing being very difficult plus some computer problems. For those of you around the world keeping track of my book i really am trying to get back into it I have just found it really difficult but i will get stuff written soon as the next chapter which will most likely cover the first couple of years post transplant.

Well that pretty much covers things for the moment. I have major hospital appointments over the next few weeks so no doubt things will get interesting as they have started already with my online telehealth appointments moved from the town i live in to Cairns about 80 kilometres away defeating the purpose of the online appointment. Nobody at Queensland Health is prepared to answer me as to why it has been moved. Ah sigh situation normal.

take care love almost all of you lol

Darren xoxoxo

Chapter 6: Transplantation (abridged)

Chapter 6

Transplantation (abridged)

As I was being wheeled to theatre I was surprised how calm I was. I knew there was a chance I would not wake up from this most dangerous and complicated of operations. As we got closer my nurse Winnie was quiet as was the wardie wheeling my chair. When we reached the door Winnie looked at me and we both knew there really wasn’t anything to say so she bent down and kissed me on the cheek and the wardie wheeled me over next to the table. Once I got up on the table some final paperwork was done and I was asked if I understood everything that was about to happen. I replied “its a bit late to ask me that now!”.

I lay down on the table so more lines could be put in me and the anesthetist could prepare to do his job. I was asked if I wanted to say anything before I was put under. It felt a bit like any last words before execution. I told them “no matter what happens do not give up because I won’t”. Turns out these were prophetic words.

The operation was long as one would expect with replacing the most important organ in the body. The new heart took considerable time to start up and was an obvious problem from a hypoxic brain injury point of view. As my body was taken off the Heart Lung Bypass machine (a machine that keeps oxygenated blood flowing while the heart is disconnected from the body) a drug called Protamine was administered to reverse the effects of the heparin (blood thinner) that was in my system.

I had a 1 in 1000 (Dr’s words) reaction to the protamine and my pulmonary pressures went through the roof with my lungs blowing up like balloons!

The surgeons could not close me up.

For the next couple of days I lay heavily sedated with my chest open with only a surgical gauze cover of some sort while we waited for my lung pressures to come down. My friend Stewart reckons it was the creepiest thing he had seen as he looked down upon me and could see the dressing impeded image of my heart beating underneath. After my lung pressures had come down I was wheeled back into theatre and my chest was finally closed with titanium wire in my sternum and the glue and internal stitches that were used in those days.

While I was out of it waiting for my lung pressures to reduce, my mum had flown down after my high school sweetheart Dianne had stayed with her and family friends Brian and June organised to get her down to Brisbane from Townsville. Bear in mind we had been in hospital together in Townsville at the same time nearly a year earlier. Dr Andrew Galbraith an amazing doctor and an amazing human being was talking to my mum and was doing the whole good news bad news routine.

As soon as Andrew started to explain that I had had a reaction to the Protamine and that it took a really long time to get the new heart started and finally that they were having problems with one side of my heart it was all too much and mum had a heart attack in Andrew’s arms. So yes my mother had a heart attack in the arms of one of the finest heart transplant and heart failure doctors in the entire world. If you are going to have a heart attack that’s the place to have it.

I already had hypoxic brain injury from the first heart attack a year earlier and now here we were with the possibility with deeper injury to my brain on top of the heart and lung issues. As is always the case with these things we wouldn’t know until I regained consciousness.

I finally woke up and by this stage it was roughly three days after the operation. I was disorientated but was picking up on things quickly. I remember thinking I had to fight harder and was saying that to myself over and over until I said it out aloud and my Intensive Care Nurse who was sitting at the end of my bed heard and told me to cut myself some slack. I guess she thought I was metaphorically beating myself up for not being strong enough and looking back I guess I was.

It’s funny the things you think to yourself about how you want your legacy to be. At the time I knew I was nowhere near out of the woods as the saying goes. I just wanted to be remembered for being a fighter. Also as a life long atheist I was not going to be a death bed conversion. I detest weakness and to me that is the height of weakness. After a couple of more days in Intensive care with a few little hiccups along the way. The central lines for pain relief and also the food tube were removed and we were preparing to go down to the transplant ward for recovery. Then it happened.

I was being wheeled to the shower for the first time after the operation, we got in there and as the nurse proceeded to wash my chest she started to pull down the dressing on my chest wound and then we both stopped. My first thought was don’t freak out! Her first words were that we had better get a doctor to look at that. You see if I have learned anything about different sections of this hospital it’s the way different nurses handle difficult situations. Unlike other areas of the hospital intensive care nurses tend to be far more decisive with their answers than the others but this lady’s answer to my question of “that’s not supposed to look like that is it” was not as decisive as I expected.

You see when the dressing was pulled down it turned out my internal stitches had come undone and I had opened up. It was about the creepiest thing I had ever seen and it was happening to my body! There it was all open bright red and fleshy like nicely marbled steak. Seen worse in horror movies but when it’s your body it takes on a different look.

I was wheeled back to the bed and we waited for the doctor. He arrived and all he could say initially was “mmmmm that’s interesting isn’t it”. I wanted to start laughing but I had this crazy thought that something might move inside me where it’s not supposed to move.

It was decided I would be closed up on the bed under local anaesthetic. All of a sudden out of nowhere nurses started appearing and the couple of visitors that were there were allowed to stay. They prepared my chest and the surgeon did his thing closing me up. All the while this was happening the prettiest nurse in the entire hospital was holding my hand telling me how brave I was. I have to admit that my first instinct was to say stop it and that I am not a child but there was no way known I was going to do that. She absolutely took my breath away. Short blonde hair and a fabulous body, I was going to milk this moment as long as I could. I wasn’t till I looked into a mirror later that day that I realised just how dishevelled I really looked. The dreams of the ill and infirmed.

Later that day I was transferred to ward 1A/B so that I could transition to my eventual release home which would take another couple of weeks as I started to have problems.

My chest wound was refusing to start healing and the risk of infection was starting to rise. The infection team started to see me and began to prepare me for the possibility that their maybe multiple operations to follow as they may need to open me up again and clean me up inside. If there was infection this may need to be done on multiple occasions. Needless to say the risks were huge given what my body had already been through. It was also one of the rare times I genuinely felt fear.

Its hard to explain just how vulnerable one can feel at a time like that but I’ll give it a go. Imagine laying on a bed after one of the most dangerous and impactful operations the human body can undergo. Your skin and flesh has been cut from the top of your sternum (bottom of your throat) down to the middle of your stomach. Three holes are made above your belly button so three drainage tubes can be installed. Then a large cut is made in your right groin for the Aortic Balloon Pump. The groin wound would take three months to heal and required me to wear a bag on it so the large amounts of fluid could be expelled.

After the chest is exposed a medical version of a jigsaw is run up the sternum and the chest cavity is opened and the operation takes place. So you have the most important organ in your body replaced and you cannot have your chest closed afterwards as you have what is described as a one in a thousand allergic reaction to a drug called protamine which is used to reverse the effects of the blood thinners during the bypass phase of the operation.

After all of the things that have been described above it is really very difficult to feel anything but completely physically vulnerable when you are laying in bed and while you are still technically open with the chest wound refusing to heal a doctor tells you we are probably going to have to go in again and clean your insides of infection.

It is at this point that you genuinely start to think that it wouldn't be too bad to die as long as it happens while I am asleep and don’t know anything about it and I don’t wake. Let’s face it, up to that point I have more than paid my dues for ten lifetimes I owe nobody anything except my mum and my donor and surgeon. In the end I pulled myself together as the one thing I never want to be known as is a quitter.

One morning during rounds the doctors came to see me as usual. Dr Keith McNeil who headed up the Lung Unit at the time was doing a shift on the Saturday morning, I hadn't seen him since he asked me if i had any questions as i sat on the table in theatre just before they were to knock me out for the transplant. I wanted to thank him for his part in saving my life. He responded by saying "don't thank me you are the one that told us that no matter what happens don't give up". I couldn't believe that he remembered. That is the sort of thing that sorts out the good doctors from the great doctors.  

Thankfully after a number of tests were done over the next day or two I was decided not to be so keen to open me up again and I was more than happy to concur. There was however still the problem of wounds not healing and this was getting me down. It was rather creepy going into the shower and seeing the two edges of this huge chest wound not “knitting” together and I was wondering what was going to happen. After a few more days and no progress I spoke to one of my nurses at the time after yet another visit from the wound management team. Bridget was and still is a great nurse and unlike so many actually listens to the patient. I confided in her that I really didn’t care what the scar ended up looking like I just wanted it to start healing. You see at the time the thinking was the best wound management was to keep a moist covered sterile environment. Unfortunately it was obvious this was not working and the longer it remained this way the greater chance for infection. I suggested to Bridget that when I was growing up the usual course of action was to keep a wound clean and dry and open to the air if practical. We decided to do exactly that and lo and behold the next morning it was like a miracle.

I woke up and the wound had dried out and most importantly tissue had started to grow down the gap that had formed after the outer stitches had started to loosen with the constant movement of the previous week or two. All in just a bit over 12 hours!

Yep sometimes, only sometimes I must stress old school works.

So over the next few weeks the wound healed but there was still the matter of the groin wound and its leaking of fluid. This would end up taking about three months to heal and was watched over by the hospital’s plastic surgeon. Yes there are real legitimate surgeons called plastic surgeons whose job it is to oversee the healing of these sorts of wounds not just give teenage girls a new rack.

Around this time I was learning about my drugs that I would be taking twice a day for the rest of my life plus a plethora of other medications that I would eventually be weaned off. There were some drugs that had the most awful side effects but I coped with it well given I was by myself with no one to help. My mum was recovering in Royal Brisbane Hospital from the heart attack she had beside my bed so mum wasn’t an option at the time. I found my self shaking terribly from one of the immunosuppressants called Cyclosporine. Unfortunately with my hands shaking uncontrollably I was genuinely worried I would not be able to look after my wounds and most importantly the PICC line that was being used to deliver drugs intravenously. I stayed in a few more days while my body settled down and was then able to go home.

When you are in a life and death scenario for a long period of time where things such as infection or the heart simply not working anymore come into play your mind starts to deal with things in an unusual manner. The thoughts you have range from what you are going to do when you win lotto this week to would it be so bad to die again. After all when you have been through it all previously it can work two ways. On one hand you can say to yourself I have been through it all before, died and was revived after a crazy length of time or you can feel the worst fear imaginable as you have been through it all before and you know exactly what to expect. I experienced both.

It also doesn’t help when you are dealing with a really great hospital that sits in the middle of an overarching incompetent statewide organisation called Queensland Health. Thank goodness when I went through this initial phase the people at Prince Charles Hospital in Brisbane, Australia were an oasis in the middle of a statewide public health mess. The health minister at the time was pretty much hated by staff due to constantly fighting with them about pay and safety issues and when you hear stories about the ward not being able to get in-ear thermometers at thirty dollars wholesale but the government being prepared to give money for a pedestrian bridge across the Brisbane river and money for the arts while health misses out, no wonder people had lost faith in the government at the time. The State of Queensland however continued to vote for them for many years as the opposition were a complete rabble.

For the next three months I practically lived at the hospital having biopsies, clinics and anything else we could do there. Biopsies are always fun. You lay on the table on your back and turn your head to the left so there is access to a neck vein (usually Jugular). Local anaesthetic is placed around the entry point of the vein, once it starts to take effect the cardiac catheter is pushed into the vein. The wire with the tiny forceps are pushed down to the heart where a tiny little piece is cut off. When I had my first biopsy after the transplant I overheard the doctors remarking how much easier it is to get a heart sample when its freshly transplanted. “Fresh meat” one of them remarked and started laughing so I started laughing with them. After they have  done what they need to do they sit you up on the table and pull the catheter sheath out of your neck and get you to hold your neck for about half an hour and you are finished. You have a drink and a biscuit while you are waiting and go home afterwards.

Whilst it is an invasive procedure it is also the easiest of those procedures.

Thankfully I didn’t have any major rejection episodes in those early months but it certainly wasn’t a smooth ride. Unfortunately side effects from the drugs were common plus there was the small matter of me not having Cytomegalovirus (CMV) in my system and my heart being CMV positive.

CMV is a common virus that most of the population carry in their system and unless you are immunosuppressed  you will more than likely never show any symptoms of illness as it is simply one of those bugs we carry as humans that rarely effect us. If you are immunosuppressed however it can be quite deadly. Transplant recipients, and HIV/AIDS patients are particularly at risk. I was at risk so I was taking an antiviral drug called Valganciclovir. As soon as I was taken off the drug at the six month mark post transplant I went CMV positive and ended up in agony with nerve damage throughout my upper body. The Heart Transplant unit had never seen someone present with these symptoms. It was the start of another nightmare. More on that later.

Once my wounds had healed at around the three month mark the leaking wound in my groin finally stopped. There was a definite moment where I realised that I was not going to need to wear a bag and change dressings all the time. It coincided with a particularly beautiful cloudless sky, the likes of which I hadn’t seen since living in Townsville, my home town.

Something happened to me that morning as I sat in my car. I think it all finally hit me. I had come to the realisation that I really did have a chance of survival. I was alone in the car and that was what I needed at the time. I completely broke down into tears, but they were tears of joy and hope. For the first time I believed I was going to live. I had endured a living and sometimes not a living hell for some time. I had been poked, penetrated, sliced, sawn, sewed, zapped and burned. The only section of the hospital I hadn’t used was the gynaecology unit and I’m sure if they could have found a way they if they could have. I was so emotional I needed to celebrate.

That Saturday I found out where my old cricket team was playing and decided to go down and let the guys know I was alive and was keen to make a comeback if they would have me. Not only were they happy to see me but they were also very protective of me. The following week I would rejoin the team and play at Victoria Point in Brisbane which was also the site of my last match 18 months earlier where I had taken four quick wickets and saved our rear ends as we were in trouble in that match. I was coming full circle.  

I was really in no condition to play yet as I could not run plus I did not yet have full confidence in the structural strength of my sternum after the operation. Still I was never very good as keeping my distance and watching so I jumped in the deep end so to speak and agreed to open the batting as I had done all my life. After an hour or so I was being sledged as usual with the fat jokes flying as they always did. It was the best thing the opposition could do as it always helped me when people made fun of me and insulted me on the sporting field as it help me concentrate and made me more determined. I was unable to run. I reached my fifty just before lunch and when we took the break for lunch I went over to my car and got some dry inner gloves and dried out the ones I had been wearing. I also wanted some time alone to relax and think about what I was doing. Little did I know something very special was soon to happen.

 I resumed batting after lunch and played the anchor role as a couple of the young fellas came out and did their best David Warner (famous Australian cricketer) impressions. Unfortunately I couldn’t run and all of the times I could have run for three runs I had to walk for a single. I also noticed that all of the sledging and insults had stopped. I eventually played a stupid shot and got myself caught out for sixty-six runs, a score that easily would have been a hundred if I could run.

Then it happened. Every single player on the field ran over to me and shook my hand and started paying me the most amazing compliments. My own team and everyone who was at the ground gave me a standing ovation as I left the field. I was really embarrassed as I was being feted as if I had scored three hundred runs. It turns out that at lunch one of my team had walked over to the other team and told them this was my first innings back after having the heart transplant and kept it quiet from me.

I have been lucky enough to play sport at a reasonably high level in my life without playing at the top level and have experienced some wonderful moments on and off the field but this was incredibly meaningful and truly emotional. It also showed me that people were capable of putting aside cynicism and recognising something very special when it occurs at any level of sport.

I have been asked down through the years why I haven’t got involved with the Australian Transplant Cricket Club and my reason is simple. For me it is a far greater achievement especially at the age I was playing before I had to retire to play alongside and against players that were young, fit and had no disability issues even though I have. If I can score runs against those youngsters then the achievement is far greater than going out and playing with and against people who have similar medical issues to me. Besides I don’t believe the awareness they claim to have raised is true in any way. Unfortunately most serious causes have become industrialised these days and people have forged careers in these fields and I find that quite unseemly at the very least.

More medical roller coaster riding was to come over the next few years.

Blog update 9 June 2016

Not my normal blog entry but its my life warts and all :)

Four years ago I wrote this on the one year anniversary of mum’s passing. It was on this day five years ago Friday June 10 2011 that we laid mum to rest. The week had been awful. The Sunday night I had been down at the nursing facility to try to calm mum down as she had been upset that night with everything. I sat with her for ages just stroking her hair and that seemed to calm her down. Eventually I went home and got some sleep as it had been a big weekend with covering netty amongst other things.

I got a call after missing a few on the Monday morning due to being exhausted. The manager of the facility spent 10 minutes giving the third degree as to why I hadn’t answered the phone when he called the first time. After he made himself feel better and powerful he finally told me mum had died. The low life piece of shit should have had a broken jaw after I got there but I had more important things to worry about. I have never forgiven him.

Going in to mums room and holding her after she had died was difficult but I had to cuddle her one last time. I had no more chance to grieve after that as I was too busy organising for her get up to Townsville from the Gold Coast and driving up there myself and tying up loose ends on the Coast.

On the five year anniversary nothing has changed. The pain and the loneliness are still as strong as ever. Her picture next to the TV still breaks my heart and moving it wouldn’t change a thing. I guess that happens when you have no-one here.  I try to write from the heart and in a conversational way people can relate to so I hope that is why my blog is reaching people around the world at present.

I always try to get better at whatever I do but the fact is I can’t add anything to what I originally wrote just before I moved home to North Queensland, so here it is.

Love xoxoxo

D

“Dear Mum,
It was a year ago today you left me. You left me but I understand. You had been in pain for so long and you were so scared. In that final weekend I wish I could have made the fear go away but for the first time a cuddle and holding your hand and stroking your hair was not making it go away.

Mum you were brave when you needed to be and you saved your children’s lives. You moved us to Townsville and not only gave us a life but you gave us a future. 

If I was a person of faith I would tell you “I’ll see you on the other side”. I don’t believe in such things, pity it would probably make it a little easier. Instead I’ll do my best with whatever time I have left to make you proud of me. 


Mum I wish every son could have the relationship with their mother that I had with you. Yes I was devoted but that’s the way it should be. It was wonderful to have you down here on the Gold Coast in your final months so I could see you every day if I was able. 

I just wish you were still here. 

Right now I have never felt so alone and I miss you so much but I also know that is selfish as you are no longer in pain and you are no longer scared. 

Goodbye Mum, I love you XXX and I will think of you constantly till my final breath.”

Blog update 7 June 2016

Blog update 7 June 2016

Wow what a month we have had in sport. The most impactful times are when life mixes with sport to create emotion. On the weekend we had the passing of Muhammad Ali and with it possibly the most influential sportsperson of the 20^th century. My family’s connection with Ali is strong as my cousin Tony fought him on a number of occasions including a win on one of those occasions. The 2 most famous fights were in the final of the national Golden Gloves tournament in 1959 for the light heavyweight title and the semi finals of the 1960 Rome Olympics for the same weight division.

We saw Alexander Rossi win the 100^th running of the Indianapolis 500, Daniel Ricciardo robbed of victory through his own team’s incompetence in the world’s most prestigious motor race, the Monaco Grand Prix, WTCC at the worlds greatest racetrack the Nordschleife at the Nurburgring and Leicester City win the English Premier League in the most unlikely major sporting title win in a century. There were so many other moments it just never seemed to stop.

Monday June 6 was the 5^th anniversary of my mums passing and the pain does not seem to diminish with time. As those close to me know my relationship with my mum was incredibly close and I miss her terribly. She was an incredibly brave and caring woman who saved her children’s lives and her own by leaving my alcoholic father in my early teenage years and raised us in a safe and wonderful environment in my home city of  Townsville, Queensland, Australia.

On the medical front things continue to deteriorate unfortunately with day to day life being mostly time spent trying to sleep and figuring out how to pay the next lot of bills. Breathing is often difficult so oxygen is a 24 hour thing. Unfortunately using the oxygen concentrator means very very expensive electricity bills. I have reached the point where I find myself having to stretch out my use of some medications so I can make ends meet. Unfortunately we live in a society that has become conditioned to thinking that Cancer in its various forms is the worst thing that someone can get and we have this whole societal thing that if you fight hard enough you can beat anything. Unfortunately this is simply not true. If you have Cancer there are so many organisations that are out there to help when you lose everything because of the disease. Unfortunately this is not the case if you are in a position like mine.

The concept of beating a disease comes with the idea that the human body can somehow heal anything if the right treatment can be found and the right attitude is exhibited. Once again this could not be further from the truth. The heart and lungs simply do not have the ability to regenerate tissue and rebuild function once they are damaged. There is no such thing as having chemotherapy or some other regime of drugs that will somehow miraculously allow you to go into some form of remission or be disease free if you somehow “don’t give up”. Medical reality just doesn’t work that way. This is the reason that the treatment of last resort is solid organ transplantation. Unfortunately not everyone in that situation is a candidate for a solid organ transplant.

So often we hear stories of people who get given a short time to live with a form of cancer and then all of a sudden we find out that they have gone into remission or the chemo has worked and they are cancer free. These are great stories and always pleasing to hear. Nobody wants to hear of someones death least of all someone like me who actually knows what it is like to actually die and then be revived after 20 minutes. Death is horrible. Its messy, often very painful and unlike what palliative care people will try to tell you it is never dignified. Death is the human body’s way of saying “I’ve had enough, shutting down now”.

My point? Remember the miracle stories of being cancer free or going into remission? Well they don’t exist when you have truly terminal diseases such as end stage heart and lung failure. If you aren’t a candidate for transplantation you are going to die and it is going to be a horrible way to go.

Think about this the next time you say something stupid and uneducated like “it could be worse, you could have cancer” to someone who has end stage heart failure or their lungs are failing. The truth is it can be and is worse and it is happening to the person you are saying that to. And yes I have had to cop this from people who don’t have a clue. I even had to hear it from a former ABC Radio colleague when I was the subject of an interview.

On the medical front things continue to deteriorate but I will continue to do my best to keep writing and get the things I want to get achieved. Went to hospital today to do a pre admission check for an upcoming colonoscopy. After going through my records and what I am dealing with right now the doctor said to me “with everything you have to deal with getting bowel cancer really is a minor worry”. Given the now extremely high risk of me having anaesthetics it was decided the procedure was too high risk to go ahead with and we cancelled. Unless it is an emergency any sort of general anaesthetic has pretty much been ruled out for any procedure now including an operation I really need to have but will simply have to put up with the pain till I die. Bugger.  

As usual each day is a battle however it really is hard not to get ticked off when people do silly and selfish things like disregard disability parking spots or park across 2 car parks when one will do. Grrrrrrr lol

Till next time, keep fighting the good fight

love D

xoxoxo