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