21/01/2016
D-DAY for me at Liverpool Hospital, Sydney, I thought I'd explain what's happening to the people that have earned my respect by being open minded and my gratitude for their support...
After much research on the part of the Haematology and Vascular doctors there (some of the best in Oz), we know what has happened, what they did and what i have to do to manage it all..
IlOPROST - This what they used for my blood infusion for the last 7 days, i was on the highest amount allowed 66 ml/h and I had the most intense headache the whole time, and my veins felt like they were literally on fire from the inside out...but I persevered for my healths sake..
https://en.wikipedia.org/wiki/Iloprost
We all believe yet not definitely sure, (due to this being hereditary yet no one in my entire family tree has it but myself), I was born with a very rare blood disorder called 'FACTOR 5 LEIDEN' which basically makes the prone to clotting.
https://en.wikipedia.org/wiki/Factor_V_Leiden
JAK2 - the NEW blood disorder found this time which they dont know a great deal about and dont know how it contracted, THIS is a gene that not only has many strains but can with certain strains (NOT mine)some bring on Leukaemia
http://ghr.nlm.nih.gov/gene/JAK2
its the combination of the 2 thats pretty much unheard of in medical circles.
The only reason I've posted this here is because people don't know the s**t I have to go through everyday cause this probably the only case in the country. The doctors They were shocked as they were intrigued and excited to find a cure for it all or even get regime to manage it with a good quality of life lived are even doing a paper on it.
And I'm still learning how to live a life...a 'normal' life on it
Im not asking for sympathy f**k no, just understanding which the real mates are doing and future mates do. I don't give a f**k about any opinions drama and bulls**t, I'M JUST ME, NOTHING MORE NOTHING LESS I'm studying my ass off like i did with guitar cause i cant play atm, I have a new passion in life studying network infrastructure and becoming a cloud architect (Microsoft MCSA+ Cisco CCNA)
https://www.microsoft.com/…/learning/mcsa-certification.aspx
https://en.wikipedia.org/wiki/CCNA
and would like to have money, to help me live comfortably and be confident within my inner self etc.
So there it is, All the doc's coming in tomorrow and explaining what i need to do to live a long a good life, then i'll hopefully be discharged on today or at the latest Friday.....
Iloprost is a drug used to treat pulmonary arterial hypertension (PAH), scleroderma, Raynaud's phenomenon and other diseases in which the blood vessels are constricted and blood can't flow to the tissues. This damages the tissues and causes high blood pressure.[1] Iloprost works by opening (dilating…