So where were we?

Okay I'm trying this on the pad but I'm not sure how long I'm going to be able to type this way.
Prize to Regulations for finding that I have been blogging again ...for a while. She is of course a brilliant person as are all my friends and relations.

I've been on the reduced immunospression for over a week now and I don't feel any different. I wasn't expecting to feel the increase of red cells as a result of the reduction in the fibrosis right away so that's a very long term thing. But the good news is I don't seem to have any of the GVHD side effects either and that's excellent!
In another three weeks I'll get another blood test so we will see then if there is any change. Nice if there is but maybe too soon to be looking for it.
On another front Bluey is losing sleep because of me and her sister. All I can do is to let her nap when she can and to "Just concentrate on getting better".
Might announce that I have restarted this blog?
More later
Chris

Well there you go.

I guess I thought we would have a week of this level then drop it to a week of that etc. but nope. "drop the one drug and cut the other in half." We will have to wait and see what other issues occur as a result of cranking up the GVHD....
----- People, we talked about this! Do a search in this blog for GVHD and then you'll have caught back up.--
The reaction could be nothing if my old body is getting used to my new immune system. If its not acclimatising the we could be in for a ride. If you did do the search you will remember that Graft Versus Host Disease targets three areas...
Yes, Ret ,the gut is one, Mary Ellen! Excellent the liver is the hidey one, anyone else remember the third area?....biggest organ in the body???.... Of course Brenda you are right!...pardon..... you knew it early...before the clue...but your keyboard locked up.  Got it in the end anyway.
GVHD can strike anywhere  as well because as we all know....SAY IT WITH ME... "every patient is different"
I amused Bluey in the car on the ride home when she tried to surprise me with the old chestnut "So tell me about your self"
"I'm 6'2" have blue eyes and I am a para-olympian." i fired back then for no know reason I continued with  "I'm active in the community as the registrar of the Australian Accountants Society cause that what I do I count things. I make a fair living counting things so I try to put back into the community." There were several cars passing wondering what was making the driver convulse.
Remeber I have the comments turned on. Please let me know you are getting this transmission.
Started work on the tips.
more later
Chris

the Support I get

Okay time to ramp this Puppy up..
1. I will be doing a Tips blog about things to do in your head to get through something like this.
2. I'm reallly going to start a video blog but that really requires discipline and a regular life. I might be able to grow some of the former and and I celebrate not having the latter so there may be a problem ...or not?

today we have a late appt in Brisbane with Doc Shoozenbootzen and my pal intragamm. he is likely to tell me to take less on the immunsupression  but the devil in is the detail. I'm on two kinds and what goes first? how fast do I cut back? I on a swag of other 'side effects' drugs and will I get to cut some of them back too?

I'm actually a bit excited, I  just realized. This is a new phase... I know its brought on by a setback but still.... exciting.

Hmm maybe I'm the laziest adrenaline junky I know.
More later

Reflections

Well I've been thinking about what's up and there's really nothing new, except that I'm not going to see the doc for two and half weeks and that appt. will start the reduction in my drugs to begin to fight back against the fibrosis..... Just waiting....just waiting.

Bluey is girding her loins but I'm pretty sure the girding is not needed. I think she should go girdless!

going to start video blog I think?

BMA Results

We have good news and bad news.

My fibrosis has returned but it is treatable.

On Friday early, Doc Shoosenbootzen called to tell me the fibrosis had returned but we had several treatment options. We will start by reducing my immunosuppression drugs so that my new immune system  gets a good hold and kicks the fibrosis in the teeth.

I asked him how sick I would get and he thought not at all.

I asked him about future transplant again, and he said there were lots of other steps in between that would be successful, including taking just the lymphocytes from the donor cells as a first case. 

Since I was out of questions I asked him what he thought Bluey's questions would be.

"Is this a disaster?....NO

Can Doc Shoosenbootzen fix this?.....YES!"

So we have a a new blip in our road to peace and fulfilment (okay that sound pretentious to me) 

How about on our road to a good book on the deck with a cold oaky Chardy!

More later

Chris

Well no news is good news right?...right?

Well we did the BMA (Bone Marrow Aspiration in long form). Well we did is a bit inaccurate I lay there with my foam Christmas antlers on and Doc Shoesenbootzen did the work.
I have a deal with the doc he can run whatever painful test he wants as long as I'm not there! Sedation is the answer.  Apparently I talk like crazy and ask for more sedation but right from the beginning I didn't remember a thing. I guess it hurts and I tell him but I have  no memory of it at all!
I also have no memory of the photo he had the nurse take with him jabbing me and me wearing those antlers. This could be true or not.
But now to the boring bit. I still haven't heard the results.
Merry Christmas

It all seems vaguely familiar

The smells, of the antiseptic the bright lighting and the murmur of voices in the hallway. It's looking like I'm about to get a steel spike drilled into my hip bone again.

Well campers Bluey and I are here at Shoesenbootzen' clinic to get my regular treatment but also to get a bone marrow aspiration... the aforementioned spike in the butt. My bloods have had a larger then liked number of weird under done red cells and lower than liked good red cells. Hence the need to drill into my marrow and extract a bit to look at.

More later after the looking is done.