Dreading a diagnosis
The two worst feelings in the world, after grief, are surely hope and fear . Hope is not always good you know, there is that desperate clung-to hope that comes with a cheery 'Let's wait and see, it might not be all that bad!' whilst deep down you feel impending doom.
And then there are times when hope doesn't even get a look in. Her sunshine demeanour is blotted out by a steam-roller of dread. As winter drew in, fear was my constant companion. All the usual, well-known sensible liver problems had given a negative result, so in the knowledge that my mother had died of pancreatic cancer, I was placed on the 'urgent oncology screening' list.
Christmas 2017 was a weird one. My first born was 5,000 miles away. All good here, I chirruped by text. But it wasn't. Scott and I cried buckets, curled up in a two person ball. Fixated on a worst case scenario, Dr Google had already found me a place in a hospice before I had even had the CT scan.
January saw the return of Little Miss Hope with a referral to the Liver Clinic at Kings and more tests, since the big C had been ruled out. I broke all records with 18 vials of blood being taken in one sitting. Kings is so thorough. Those little bottles will keep the vampire babies happy, I joked with the flustered nurse who was new to the job and struggling.
My LFTs were through the roof - I think that means Liver Function Tests. There is so much jargon in this condition, I can't begin to know every acronym. I had camera invasion at both ends, lay in noisy machines and had various probes rubbed over my torso. It was all rather alarming especially when the ultra-sound nurse looked at me sternly and said; 'Don't breathe'. I have very poor medical knowledge, but I do know breathing is pretty important.
With each test, the options were narrowed, funnelling me towards a diagnosis of Autoimmune Hepatitis, which did not come until April; six months after I had first known I had a problem with my liver. There is a wonderful Futurelearn course on looking after your liver in which an eminent hepatologist explains that AIH (Autoimmune Hepatitis) is usually diagnosed through a process of elimination. For a pragmatic physician this is probably quite an enjoyable process, but for the sufferer it is a complete roller-coaster.
And then there are times when hope doesn't even get a look in. Her sunshine demeanour is blotted out by a steam-roller of dread. As winter drew in, fear was my constant companion. All the usual, well-known sensible liver problems had given a negative result, so in the knowledge that my mother had died of pancreatic cancer, I was placed on the 'urgent oncology screening' list.
Christmas 2017 was a weird one. My first born was 5,000 miles away. All good here, I chirruped by text. But it wasn't. Scott and I cried buckets, curled up in a two person ball. Fixated on a worst case scenario, Dr Google had already found me a place in a hospice before I had even had the CT scan.
January saw the return of Little Miss Hope with a referral to the Liver Clinic at Kings and more tests, since the big C had been ruled out. I broke all records with 18 vials of blood being taken in one sitting. Kings is so thorough. Those little bottles will keep the vampire babies happy, I joked with the flustered nurse who was new to the job and struggling.
My LFTs were through the roof - I think that means Liver Function Tests. There is so much jargon in this condition, I can't begin to know every acronym. I had camera invasion at both ends, lay in noisy machines and had various probes rubbed over my torso. It was all rather alarming especially when the ultra-sound nurse looked at me sternly and said; 'Don't breathe'. I have very poor medical knowledge, but I do know breathing is pretty important.
With each test, the options were narrowed, funnelling me towards a diagnosis of Autoimmune Hepatitis, which did not come until April; six months after I had first known I had a problem with my liver. There is a wonderful Futurelearn course on looking after your liver in which an eminent hepatologist explains that AIH (Autoimmune Hepatitis) is usually diagnosed through a process of elimination. For a pragmatic physician this is probably quite an enjoyable process, but for the sufferer it is a complete roller-coaster.
Fascinating how it varies. I had odd blood tests, repeated, and before I was even told I'd been referred to a consultant I had worked out from the patient access results + Google that it was probably AIH. An ultrasound ruled out anything solid (no-one said cancer), the hepatologist said biopsy (while I was still trying to wriggle out of it), and I had that a couple of weeks ago. Will see hep again in a few more weeks for the final (I imagine) diagnosis, but that's barely over 4 months.
ReplyDeleteSorry to hear your experience has been so tough - I guess the family history had a part in that. But this 'diagnosis by exclusion' thing is weird, isn't it. I'm still symptom-free, unless I think about it a lot... which is leading me to ponder how ill we are made by being told we are ill.