Trehna's Journey 

I'll try to keep this one in summary fashion!!

I became ill in 2000 with a resistant form of Staph Septaecaemia, and went into clinical shock before help was given, so a lot of damage was done at this stage. I never really recovered from this and the ensuing years became a battle for diagnosis and a fight to not be dismissed as yet another stressed out menopausal woman!!! Finally in 2004 I thought I had the diagnosis of what was wrong with me as I had gone from being a superfit superwoman who could run at a million miles an hour without blinking into a person who couldn't get to the top of the stairs without stopping to catch my breath. 

Initially I was misdiagnosed (we think) with a heart condition - Aortic Outflow Tract obstruction and treated with beta blockers for a year. I then developed multiple pulmonary embolisms, and more tests followed because I was getting more symptomatic. These tests revealed that I did have Pulmonary Hypertension at this stage it was thought to be primary but in 2005 I became quite ill again and this time they redid a CT Scan that was done some 2 years earlier only to find that I had very bad Pulmonary Sarcoidosis and Fibrosis and this was also present in my veins and artery's, forming obstructions in blood flow to my lungs. This is now thought to be the cause of my ongoing PH.

Cure - None, we have tried so many now and my body seems to react with everything, to the degree that it is even questionable as to whether a lung transplant would be possible. Drugs tried and some still on are:- Bosentan, Warfarin, Lasix, Spironolactone, Prednisolone, Warfarin, Oxycontin, Oxynorm, Oxaxepam, Ketamine, Maxolon, Dolasetron, Infliximab IV, Cyclophosphamide IV, and a few others to boot.

Nothing seems to have worked so far, awaiting a wonder drug or transplant I am one of those people that are too well for transplant but too ill to lead any sort of normal life and getting very fed up with not living.

Trehna