Id been tested all my life to see if I may carry in my genes, a rare incurable, blood disorder that,when mum was told she had it over 50 years ago, there was no treatment at all, she got by largly due to her being a hard working dedicated mum to 6 boys. later in life this disease reared its head and mum eventually died after a long slow painfull trip thru everything Porphyria.
Then modern medical science developed a new test for it and that entailed the tests being done in the dark, Light kills off the bit they test for, so if its collected In dark conditions they stand a better chance of detecting it.
My liver (Proffessor) consultant did some extensive tests, in low light conditions and all that stood between me and the start of my treatment for hep c was the results, as I had presented with the same symptoms as one who would have acute intermittent Porphyria diagnosed.
I arrive at the hospital,knowing that nothing would hold me back, today is the day I have had to wait so long for and was already delayed by months due to a hospital stay that put everything on hold.
In I go...wow is this the best day ever! I met my hep nurse, she sat me down and explained that I do not have acute intermittent porphyria, Now I'm on fire, this is great,secretly hoped that's what she would tell me, there it is, best news in such a long time.
She told me she was waiting on my blood tests from the prof before I could start ANY treatment as the contraindications for hep c and porphyria are dire,
I insisted that it had been some time since those tests had been done, (9 days) could she look again as the prof told me 4 days to get them back, she checked and TOLD me...I have chronic porphyria, its been in my body all my life but lay dormant until my recent bout of ill health, the last person she saw with hep and porphyria had a liver transplant and could now not offer the proposed 8 week treatment for my hep, Harvoni for 8 weeks with 95% success rate.
She insisted I had to wait till she heard from the prof to find out what my treatment would NOW be...
After two and a half days of shear misery and feeling totally doomed, constantly planning a way out of all this by my own hand, I get a call this morning saying she had given me the wrong information, can now start treatment 4th may.
That call she made after making such a HUGE mistake may be all she needed to do to satisfy herself, now I am more confused than ever, she is on holiday hence the wait , cant contact the prof, this turned my life on its head and I'm not sure I can undo the damage done by it all, its affected an already frail marriage, my wife just recovered from her own battle with breast cancer, that was 6 years in the doing but she did it.
I'm already screwed up over having hep c in the first place, I help people for a living, have done and health allowing will return to doing what I do but can I find help for me, my support team set up to help me thru a breakdown that arose from my diagnosis only pay lip service, they are more worried about how good they look on paper and have left me stranded on more than one occasion.
My hep nurse got it wrong, Ive got a lot wrong in the past, not at the expense of anyone's life!
That's why I'm on this site,the support I have received thru these pages outweighs any I have received by so called care team, I'm totally gutted and don't know if a bender total wipeout is not called for, either way I'm screwed so whats the point,
I'm sick and tired, I really do want to lay down and go to sleep. when does the insanity end? will I get some help or will I die in a prison cell, so screwed up that I end up in trouble,today my support who didn't have time to see me really,handed me a letter to show the local swim centre, the letter identifies me as being in their care.sugested I go to the gym and promised again for the 13 th time that they would chase up support for me, Well heres one for ya...do I go to the gym in my bed,Im not bed bound but may as well be, I either stay in bed or for a change sit in my own lounge in a chair, been that way for 6 months now. They must be blind as well coz I can do very very little, my energy has gone down to 3 to 4 hours a day and I'm exhausted. I have gone from 21 stone solid to 13 stone, and they want me to go to the gym,that of course will kill me stone dead!
