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