Roller coster week

While its been relatively smooth sailing for the last year but since I have not updated you all in over a year I though it was time.

Also things have changed sort of.. then again there are things that have been this way before but...

I'm getting ahead of my self as usual.

I've been getting good medical coverage for the last year. month visits to Doc Shoozenbootzen, monthly visits to the scots GP and bi monthly Skype calls to the Big Boff.  All okay. but in the last few months and especially the last month my kidneys have worsened. Really slowly but last list with the oncologist he insisted I get on to the GP and the Nephrologist to see about them. By the way he is really happy with my Myelo Fibrosis. Stable. My red cells have been down but an adjustment to my Aranesp has that sorted.

So that was a downer a bit I've been holding more fluid in my legs and he was worried so my GP had a talk yesterday and she thinks we can control it they are both concerned about my blood pressure as the bad kidneys (hand in glove thing). So today I Skyped with the Nephrologist (the Big Boff) and he's concerned as well we looked my stats, my drugs (the changes made last week) the questions the GP had and heres the deal.

My kidneys are leaking more protein and albumen then ever, that causes the fluid, the BP is a little high but we are going to do the 24 mobile BP test to make sure. The BP drugs are both good and bad for kidneys so want to balance it. We may talk about the compression stocking, oh joy.

I started on a second water pill each day last week and we may watch that and see if that helps get the fluid down. I'm also spending more time on my aback with legs up.

I'm too full of Potassium and the evil drug to fix that is like drinking sand. You heard me! It is tiny crystals of styrofoam with an active ingredient to bind the Potassium and take it out the back door. You aren't allowed to lay down for an hour after your take it. Ive been having trouble taking this stuff on a regular basis, I keep forgetting! Ya think! Anyway we have all agreed that we need to look the potssium chart again and identify my problem areas of food intake and guess what... The whole chart is my diet!

I have to give up some stuff.

Anyway the big news is we are starting to look at local area resources for dialysis for as early as next year. We'll start talking to renal units in the area and mapping my veins and look at how we might access them.... PiCT Hickmans, Fistula etc

I'm thinking that my blood cancer is taking a back seat to my Kidney disease. This is because, in part, because I have had bad kidney readings before and got the "its up and down talk" but this time its "they are starting to wear out" instead.

So More than ever if you want to come visit paradise and play with Joyce and I start planning now!