If its complicated that's the way for me.

Okay remember that Doc Shoozenbootzen wanted my kidneys looked at/ monitored by my local GP. Turns out she is on five weeks leave so I saw her office mate instead. He seems very nice and above all thorough. He got the referral letter back from Doc Bootz and proceed to give me one complete internal exam...from the outside. I never knew a doctor to get his hand up under my rib cage that far. Anyway its a bit comforting that my internal organs have all been 'touched' by Doc Y. So he sent me for another blood test that I did on Tuesday and then before I could call on Thursday his nurse called me! Anyway it must have been okay because I just have to repeat the blood test in 7 to 10 days. If it was bad I already had the Rx for a kidney ultra sound. Oh and a pancreas ultra sound, this last part is because they found a bump on it years ago in the hospital and just want to keep an eye on it.

 Just now you are thinking 'really on top of everything else ..a bump?'

 I remind you of the title of this post!
more later
Chris

More Sunday calm

Well I had a week of drinking lots of water, blood tests Wednesday and skype call on Friday. Doc Shoozenbootzen said my reds were back up to 95 still a bit low but way better then 78 anyway he is still puzzled by where my red cells went to. Add to that my kidneys are crap again and he wants me to see my local GP to get a grip on that. I'm not going on tHe trial. They are starting with different people and the doc is " pissed off" so I'm going to start my own trial on one of the regular interferons, not the tessellated variety. There is some misremembering here about how I get it, (at local hospital or self administered). And we will be meeting on Skype more often. So I start in July on the new treatment and a bit glad as we have been finding new things to try but we haven't been trying anything! So at the end of the conversation the doc gets a funny look and announces that maybe the missing reds and some cleaned up whites might mean that my immune sys HAS started up to kick the fibrosis on its own! Knock me over with a feather. This is still just a theory and I'm still starting on the interferon and the doc is not big on false hope But still.... More later Chris

The calm of Sunday

Bluey is still a sleep. I get that as its been a busy few days and she drove all the way down to Brisbane and back. Red dog does NOT sleep in and REQUIRES his morning walk and now I can't get back to sleep. Doc Shoozenbootzen said in passing tha this little wrinkle should not keep me from the trial but nothing about when it starts etc. so thats something to think about and obsess over. He has booked me for more blood tests Wednesday with a Skype chat on Friday to see where we go. More good obsessing material. Red cells live for 90 days so to have 101 - 78 = 23 (thousand?) go missing in one month makes docs freak out. It's like my Mom would say to the four us trying to elicit a confession.... "well they didn't just get up and walk out on their own!" Now that's really good obssesion material. So te recap.
 What we don't know
- where my red cells are going so fast
- whether I go on a treatment trial soon
- or later
-whether I go to the next level of treatment ..the donor Lymphocyte Infusion sooner
- or later
- whether any plans for my birthday in August will get screwed up
 - or not
 What we do know



 {this space left blank on purpose}




 More later Chris

Keep a look out

I seem to have misplaced my blood. They are currently looking into why it's gone and I'm half way through my first of two replacement bags. No immediate adverse reactions but my tummy is a bit whoopsy. Could just be the long day. May try to convince Bluey to stay in a hotel tonight. Still have not had talk with the Doc either. 4:30 pm and still dragging along. Oh well at least I have my health, no wait.... More later Chris

The real problem

Its not that my fibrosis has reduced the amount of red cells to 78. It's not that my plateletes are now down to normal levels for the first time inn 18 years(expected to be always up abit because I have no spleen now). Nope. The real problem is that Bluey is going to wrap me in cotton wool now. Gone are the carefree days of climbing ladders to clean the gutters, or hoisting the kayak on pulleys to the ceiling of the shed, these were done two days ago with the read at this low level. Once I get these two bags of blood today I'll be fit as a fiddle in hours. But she is going to be worried that I'll drop again. Doc Shoozenbootzen is a bit stumped as to where my blood has gone. He's called for a whack of new tests so more blood to be drawn... And now there's a drama about cross matching my bags of blood. We have to get permission from on high to get the premium grade universal because it's looking like I'm half my old type and half my new type so it's freaking the cross match people in the lab. It's now 3:17 and still haven't had the long talk with the Doc or got the extra blood we might have to stay over night? Sigh More later

It's not my fault

Red blood level of 78, my usual is 120 to 130 lately been dropping, usually get bag of blood at 90. Waiting on two bags! Crap! Bluey upset. Guess this is why I've been puffing lately.

Waiting.....

Still have not heard if I'm going on trial, or doing DLI. Sigh.