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
