The start of the journey

Welcome to this blog about my diagnosis and treatment of this rare disease –

AL Amyloidosis.

Amyloidosis – what is it? That’s exactly what I said.

According to the NHS website definition, Amyloidosis is
‘the name for a group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. ‘

You can read more about this here :-
https://www.nhs.uk/conditions/amyloidosis/

My diagnosis came after many months of investigations for various symptoms which I am happy to share with you. I’d like to be as honest and upbeat as I can about what happens next and think writing this will be good therapy for me whilst keeping you up to date with what’s happening – assuming you want to know! If you don’t like to hear about bodily functions then perhaps you should stop reading now but maybe by sharing my story we may be able to publicise more about this disease and possibly dispel some of the very negative and damaging literature that appears on Dr Google! Don’t get me wrong I know this is serious stuff and it won’t be a walk in the park but having been recently diagnosed I don’t need to know that I may not survive the year as one website liked to inform me. I say ‘we’ as I know I can’t do this alone and would like you to share, comment and ask questions as we go along. I really appreciate how supportive and encouraging you have all been so far and thank you for indulging me in this blog. Now to the nitty gritty of how this all came to pass….

In my case of Renal AL Amyloidosis it’s all about the pee!! Imagine someone drops a spot of washing up liquid in the toilet bowl before you have a wee. You go to the loo and before you flush you notice it’s all frothy (‘it’s frothy man’- remember that advert in the 80’s for Cresta soft drink… maybe not?) Anyway, it was frothy and knowing this was not normal I turned, as you do, to Dr Google for some answers. On various websites there was a suggestion that it could be caused by dehydration, over exercising, remnants of toilet cleaner (in the bowl not in my urine!) and possible protein in the urine. At the time I was exercising a lot, running 3 times a week, walking the dogs and had a reasonably active outdoor job and was prone to not drinking enough so I decided to drink more (water that is not Prosecco!) and wait to see if things improved. After several weeks with no improvement I went to the GP and asked if I should be concerned. He checked my urine with a quick dip stick, pronounced there was protein present and sent me packing with some antibiotics for a urinary tract infection despite me having no other symptoms. The foamy urine continued and I ignored it, thinking it was just one of those things, until some of my routine blood tests I had came back showing I had a low blood albumin (protein) level indicating that I was losing protein through my kidneys. The GP sent a urine specimen to the lab for testing which showed massive amounts of protein in my urine. I’m hoping I haven’t lost you all by now – I know this is very boring so not much more on the pee stuff. The normal range for protein in urine is less than 20mg/dl and mine was greater than 984mg/dl, basically off the scale so the investigations started. This was Dec 2018.

Now, some 5 months later, following various blood tests, CT scans, ultrasounds, a bone marrow biopsy and a kidney biopsy I finally have a diagnosis and it’s pretty rare, AL (this stands for Amyloid light chain) Amyloidosis. Here’s a little video of what this is.

Having met with the Renal consultant on Wednesday 24th April 2019 he explained that as this was fairly rare (trust me to have something uncommon) I was to be referred to The Royal Free Hospital in London for a specialised scan, a whole body SAP scintigraphy scan to see if the amyloid deposits are in any other organs of my body.

Now I’m waiting for an appointment to go to The Old Smoke to get this done which should be in the next few weeks. Hopefully whilst I’m down there I’ll be able to catch a show – recommendations are very welcome. In addition to these suggestions I’d like to compile a play list of tunes to while away the hours I will be hanging around waiting for scans and treatment so I’d really like your help, I’m fed up listening to my own playlists. Your choice can be any tune you love, maybe it’s uplifting, soulful, catchy, funky and up beat (I like a good dance as many of you know) and from any musical genre as I have very eclectic taste. It will be interesting to hear what you come up with and I promise to listen to them all. This should be interesting 🙂 . So that’s it for now. Please feel free to share this blog with whomever you choose.

Over and out for now

Anne xx

So don’t ignore frothy urine…