Update – My Amyloid Symptoms

Did I know something was wrong before diagnosis? Looking back several small things happened but I thought they weren’t significant at the time.  I had just stopped playing competitive football on Saturday’s but carried on with sport like squash, 5-a-side, biking home from work (12 miles) etc.  I noticed about Sept 07, that at times I felt a little flat and more breathless than usual. I put it down to not training as hard and thought no more of it.  This breathlessness even started appearing when walking up a bank as a walked home for a 1/2 mile from the bus stop.

About December time I also noticed one morning I had got a black eye lid from rubbing my eyes as I woke up.  Although at work they insisted on other scenarios like the wife and fighting!  These two symptoms (breathless and black eyes) were related looking back but didn’t seem significant at the time.

The third key symptom was protein in my urine which was picked up just before having a gastro biopsy for a reflux issue I’d been carrying for 20 years.  20 damn years and they finally said I you need to take these antibiotics for a week and then you’ll be ok!  Cheers NHS.

Unfortunately, this biopsy led to a choice of Urology instead of neurology and this delayed matters in picking up the Amyloid deposits in my kidney area.  This was at a different hospital and before I was submitted to hospital with my original pneumonia in March 08.

Since leaving hospital in April, I also have a lot of water retention as my blood is not holding the right balance of protein combined with the tablets (The steroids from the chemo regime encourage water retention).

I’m hoping that with my positive response to the treatment so far that these symptoms will reduce significantly once my body can start working off the deposits around my heart and kidneys but I’m led to believe this can take a while (months – to a year and a half) but then not guaranteed to completely disappear.

Choo for now, Phil

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