I've been putting this off, I think

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I had a long talk with my nephrologist, well a half hour but that's long for him. I aksed him how i was going on this treatment because I know what the levels are and they are not all that great.

I told him I know that the docs don't like to speculate about the possible outcomes but really what's the go.

He said "That's like asking me to say what all the outcomes of chess game are after the first move. Boris Spatski could but not me".

I did find this out.... and keep in mind that this may change.
We talked about my kidneys are currently half crap. that is to say they are doing  40 to 50% of the effective  job they should be doing.. The treatment I'm on (Pontecellie Protocol) , if it causes change the change will be in any of three time periods 1. Now. while in the treatment. 2. Immediately after word, 3. within a couple of months of the end of treatment, so we won't talk about future treatments until  the new year (maybe Feb March).

I may be doing dialysis in 5 to 10 years if nothing else works. I'm a possible  prospect for transplant  now because of my age but in 10 years I won't be. He has a bunch of ninety year olds that are dong quite nicely on Dialysis so not to worry and that the science is getting better every year.

He was firm in saying that although the current treatment has not made significant change at the moment we won't know till later and that there are other treatments lined up as well.

Now to report what doc Schoozenbootzen said yesterday after looking at both my bone marrow and chemistry results. " I see stability" " Although there is not significant improvement in your kidney chemistry there is also no further decline, You have stopped getting worse" . WoooHooo I'll take any good news including at least you aren't getting worse. I find this to be hilarious but I do have a big black humour reservoir.  He went on to say that my MyleoFibrosis is stable as well still there but not causing grief and not screwing up my blood counts to much.

I'm reflecting now to all those teachers that said "Chris could do so much more but he performs at an average level." My bone marrow has adopted my style and is performing at an average level. (I guess technically not even average cause that would be like all you people with fully functioning blood cells).  Anyway I'm puttering along getting Intragamm each month and    trying to be a bit fitter.

I've been going to aqua exercise class now for three weeks.will probably start in the gym in the new year. its good. And I have a  lot of projects planned for around the house so should be able to keep fit that way too.

Oh and that chart I made up of the doses I thought I would get while in Greenslopes. I got over 50% of it right those I missed were very close. So I'm pretty proud of my knowledge about my own insulin production.

More later
 Chris

How odd

this morning I was in a hospital getting treatment and now at 9:30 am I'm in the fifth floor hotel coffee shop beside the train station. Its a medium level buzz fest about the G20. Journos from what sounds like all over having breakfast around me and I'm looking out on the balcony where they have two Talking Heads set up. Saw two different guys but they could have been twins doing interviews. But they were obviously talking to someone in a studio somewhere.  Now its sitting all vacant. The server tells me that the sets have been used continuously from friday night.

The ride over was quiet and without any traffic jam. Lots of road blocks on the side streets but no problem getting to Roma Street station. There is a whole contingent of Police in the Transit centre but no excitement. I can't see any world leaders taking a bus out of town.

My life is very interesting...
Looking forward to seeing Bluey at 3:00pm today.
More later
Chris

More on bored people

More on what bored people do in the hospital

They have a coffee in the coffee shop downstairs and they up date their Blog.

I reckon nurses don't get as much praise as they deserve. The job has become so much about paper work and getting all the boxes ticked and yet they still seem to have time to be genuinely interested in your life as well of course of your wellbeing. I have met and re met some outstanding  nurses in this year of popping into GPH. They are all great. they keep their heads as the pressure builds they are pleasant and explain what's going on and they stick to the rules  even when its inconvenient for some prednisone boys. I just can't say enough good things. Thanks to the GPH nurses and to all the staff. And thanks to  my other nursing pals especially ones that left other careers to join nursing!

more later
Chris

Going good

Going good with my Insuin and blood sugar levels. today I start the reduced Prednisone pills and at this time last cycle my readings were still over the top but this morning I was well within range. So may get to leave on Sunday.

Had a great visit from Wal and Mary Ellen last night. They drove in after work and visited for a couple of hours. Good yarns, catch up and laughs thanks guys. Wal told a story on Pat Ehrich about figuring out  that a horse is pregnant.

Hey Jo got any other daughters looking like that?

Good eh?
more later Chris

What Bored people in hospital do

Well maybe no what ALL people do, but what I do.

Ive been looking at these cupboards and my lst room had the same problem. the two doors were out of alignment the top door tilted up and the bottom tilted  way down. As I always call my multitool I adjusted them and now they look like this

Its what I do. But its really what I do on Prednisone.

more later
Chris

Its all about the numbers

Insulin Units, BSL (blood Sugar levels), Rb(Red blood cells), Wcc (all the white cells), Neutrafils (the best of the whites, Is to the whites what a buttery oaky chardy is to white wine), Creatin, Albumen.... and on and on.

If the numbers come out right I get to go home sooner! I'm doing better this time because we have the records  of last time we did this exact procedure. Here's my guess at my doses this time around.

As you see they have been changed already! but the BSLs are better this time! So I'm on track for early release.

But release to what? We have to see how Bluey can get to here through the city or around because its all in G20 mode here and lots of roads have been closed for the weekend.

We'll get it figured out and I'll get out sometime.

more later

Chris

Just chill'n

Waiting in the hotel before I check into the Green slopes Country club.  Actually its the Green Slopes Private Hospital. some time later this afternoon I go in to start my third and last round (hopfully) in the Pontecelli Protocall for my kidneys. I will get 1000 mgs of Prednisone intraveniously each of three days then 50 mg oral. each day after that I will be in the hospital until they get my insulin balanced after the three days and that took 3 whoole days last time. I'm hoping that with the records of the doses last time, where we were just guessing the levels and then making the adjustments in the next dose window, we may get the jump on getting the levels right sooner.

Anyway I've already set out a chart of new levels for the whole 8 days I may be here and we'll see how I do at getting them right. I of course don't get to make the decision my wonderful Endo team leader Dr Who is in charge of that. or leaves it to the registrar. We'll see how acurate I've been.

I'll have lots of time to blog so watch your inboxes if you've set up notifications and if not... check back often.