I'm not sure what I have told folks about re my health.
I'm travelling and have been all over.
So first thing first my Myleo Fibrosis is pretty much the same and the new medication is doing some of which its should be doing but...
It's stopping the itch/tingling in my hands and feet. it would be reducing the size of my spleen, If I had one so that's not a benefit. We had hoped that it might help my kidneys but not so much joy there. In fact two meeting ago the kidney doc was included in a conference call and concluded that my kidneys were what they were and we just had to watch the levels in anticipation of dialysis at some point down the road. The phrase 'end stage management' was used but that's the end of my kidneys not the end of me. Doc Shozenbootzen was holding out a tiny bit of hope for the new drug but did say that there was no clinical expectation and that if it did work then 'we would be writing it up for the medical Journals'.
But
There's always a but
The new drug has lowered my Hb or red cell count. I've had about 8 bags of blood in the past four months and the other drug I take to raise my Hb has been doubled. So we need to take a long look at the good and the bad of the new drug and make a call when we get back from hols ....I may stop the new drug and control the itch with moisturising as I did before and enjoy better blood results
Bluey is a bit sad that we have lost hope to repair my kidneys but I'm just looking at the half full side and that is I'm at 50% useful kidneys and dialysis starts at 5% so .... good for a while.!
It doen't help that I went sailing on a tall ship and had a guy land on my ankle and broke it. I also caught a bad chest infection that is sticking with me a bit as is the cast on my ankle. Makes it hard to travel but it's coming off in Calgary I think.
So bluey and the neighbors are out in the rental pool right now and I'm sitting in the dark(feels cooler) typing this up. We are in a share house with the bridal couple, parents of both, relatives, the Murder House Bridesmaids, cousins arriving still... it's about 25 people but there is never a Moment when they are all stopped so who knows really.
What?
Oh the Murder House Bridesmaids that's
A great story. Make a comment and ask me about it.
More later
Chris
