I’m free

Still waiting

Well that was unexpected!

I'm in hospital.

Yep, didn't see that one coming did you? Neither did I. I thought doc Shoozenbootzen was going to praise me for getting all that water out of my ankles and for tackling the skin problem. The issue was that my potassium was way to high (can lead to heart problems) and my creatin was way high. So I'm in getting hydration and and lots of resonium to lower my Potassium.

I'm not sure if I have spoken on the delights of ResoniumA powder. It's like drinking sand! It's ploystyrene with an active ingredient that sludges through your body snaring up Potassium ions and then carrying them out the back door. I was doing two shots a week now I'm doing four A DAY!

Hopefully I'm not here long. Went in last night (Tuesday) and may be out on Thursday. Gene was with us so had to go back on the train last night. Joyce stayed in the hotel across the street. She has booked another night. Just waiting and seeing. Could be a crappy Christmas but hey the food is not too bad.

More later
Chris

Things are better

The extra water tablets have worked my legs are regular size and my skin has shrunk back down to regular size. I got Dermatoolguy appointment in Brisbane las Tuesday and they aren' sure what the cause. They did three more punch biopsy to see if they can find out but they prescribed some extra strength steroid cream has is working a treat. My skin still itches fro time to time but not fiercely like it had been. I'm already on the step down steroid cream they gave me to follow the extra stuff.
So things are quite a bit happier around here now. Still reacting a bit when I get too hot and sweaty but oh well.

more later
chris

"You look flat today, do you want a referral to a Psycologist". " No thanks doc I'll just blog"

Okay more stuff and I'm going to do a whiny first part but DO NOT respond till you have read to the bottom.

Catch up: saw the Nephrologist (Kidneys) doctor on Tuesday at then had my treatment and saw the oncologist later that same day. Saw my GP today.

Its a bit longer than this and more detailed but basically. I'm not going dialysis early in the new year, more like this time next year. But I need to get my plan set up so I'm being referred to the local hospital renal unit to get started but I'm Cat. 2 , so I'll get seen between 30 days and 90 days from now. It's to get my access methods sorted, my veins mapped etc etc.
I'm now down to a calculated percentage of kidney function of between 13 and (20 % -okay the doc said 16 % but since its just a rough guide I prefer to be in denial).

My chemistry results were static since last month so no more loss so thats good. My cancer is going just Jim dandy thank you very much, stable with all my cells being produced. (My problem is that I make way too many of the in-between immature blood cells and not enough real ones. Its not a problem really as I just pee out  the unused ones......oh wait. I'm having trouble with my peeing system.
My kidneys are Still holding in the creatine (bad stuff) and letting go of too much albumin/protein (the good stuff).
Oh and guess what keeps the liquid inside my veins....Hydroscopic pressure that comes from the Albumin etc. so Im retaining fluid in my hands and legs. So I've up my lasic express pills to four a day.  I call them that because when I suddenly feel that I have to go....I've got to GO NOW!

I'm having problems with cramps in the night so the mag has gone up 6 times,

But here's the big thing and its really the smallest thing but I think you'll agree that its its keeping me flat.

I've developed a rash! I've always had itchy feet and hands but now Its on the back of my calves, knees, elbows inside arms, back of upper arm, and rib cage- both sides. Its an overall slight itching like sweating in a wool sweater, type but from time to time (multiple times a day) one of those areas will get "set off" by a scrape with end of plastic bag, brushing against a rough fabric, my own sweat, etc. then its gets to richter scale itchy, I can't help myself and I scratch. Then its game over and it explodes into raised mini welts. Usually i scratch in my sleep and I'm up several time night re washing , re creaming and re cortozone creaming. During the day I'm usually able to resist and I get to the cort cream to kill the flare up but sometimes like at the doctors today I forgot to bring it so I'm totally doing an internal dialogue about not scratching so I guess that makes me flat!

I'm having to reduce hard work as my sweat sets it off, I'm showering at least twice a day and having a bath in Alph kerrie once a day. I'm gong through gallons of body lotion but I'm getting some things done. Joyce is having to gurnie the deck as I can't and i'm barely able to get to town do the shopping and get home before I have to grease up some more.

Okay here's the second part. I feel better for just laying it out in this blog. Please DO NOT respond here or on Facebook with any comments about 'poor you'. I'm fine I'm just itchy.

If any thing you can write about why your day sucks! Yes tell me why you are way worst off then me!
Its all subjective anyway, so we can comfortably go off after and think to our selves "that WAS bad but I'm still the worst off. Its a Win win. I get amused. You get to get something off your chest. See it was working there for a minute i didn't feel itchy until I said chest.

Or you could just session d her or face book with a single typed   .  Its a dot, a period, a full stop. and it just means I hear you bro.

I have to sign off now as I was itch free until my right rib cage flared and now I'm off to the creams.

More later
Chris

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!