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