A Big Day.

 Well it was a big day in the chair yesterday. A Big Day.

Got in early at 9:00am so we we up at 4 on the road at 5:00am to get to Brissy in time. It was really weird as there was pretty light traffic despite being the later end of rush hour as we got to Briasy. We got a newbie and she had a bit of a fumble on the access so we had another great nurse make the jab. Took blood and started the Intragamm. turns out that the super Nurse Practise Mgr from yesterday figured out how to get the operetta testing company to fix up their error and my crossmatched blood was waiting for me. Win! That will speed things up......or not. for some reason the access was slow and I was in the chair from 9am till 430 pm and then time to see the doc so didn't get out till after 5:00pm.

Obviously missed my 4:10 appt with the kidney doc but we called him from Doc Shoozenbootzen's office  so had a inference call. We all decided that the various treatments to my kidneys, Pontecellie, Myfortic etc., has not worked.

The phrase "move into end management" was used.

Although this sounds daunting those of you that have been playing along at home will know that this relates to the end of my kidneys not the end of me. As a reminder (to me as well as to you) the kidneys are at 50% and dialysis doesn't start until my kidneys get down to 5% so that a ways off. Also previously we've been told  that I can do dialysis way into my old age, which is good because I've also previously been told by the time my kidney do pack it in I'll be to old to get a transplant.

Pause for self pity. ...... Okay now that bullshit is over....   so get on with it.

First off no one knows how long I'll go before my kidneys get worse. It's a very slow thing right now. Second I heard on the radio about a treatment that was given 24 months to take effect and they had NO sign of success until 22 months in. I take this to mean in my situation that there is still a bit of time for the new drug Jacavi to maybe help although it's a fibrosis drug not a kidney drug.

And hey I'm going for a week long sail trip starting in a week. Joyce is retiring in a month. We are traveling to NorAM later and then Bali. I'll still be able to travel in Aus later so it's all good.

More later
Chris

Update from this afternoon

I called the best practise Nurse in the universe and she told me that I'm at 88 and they will book me for blood tomorrow. Except I'll be held up because the test I did yesterday, in order that the blood, if required , would be waiting for me, was done incorrectly! so that adds about two hours on to my wait time at the clinic tomorrow, because they have to wait till I get there then take blood and send it off for cross match and be tested and matched to the blood stocks so I get the best stuff.

The name of this testing facility shall not be named but their name is sort of like a operetta group in England. If the current government gets back in they are planning on making people pay for their own tests and if that happens a lot of us 'regular' users are going to have to cough up thousands and thousands of dollars in a year. The ONLY good in that is that the testing service that is fat and happy and slack will have to start dealing with patients like me who are going to be wanting better service.
Don't get me wrong the folks on the front line are for the most part real angels but the system needs a bit of competition I think. I want  medicare to still pay but I want to sign off on the service getting the $

So its off to Brisbane at 5 am tomorrow. And with a second, but late, appt at the Nephrologists its going to be a long day.

Life's good!

Okay I've been remiss but I have an excuse.

Lots of things going on but first to the "weather report".

Things are a little changeable at the moment. Rain on the horizon maybe but it might just blow over.

Less cryptic version. I needed two bags of blood last trip to Brissy. We booked for overnight the time before and I didn't need it. So when we had to check into a hotel to get blood the next day we had no luggage no toothbrush etc. tomorrow I go down again and we are taking a packed bag but hope I don't need it. I feel good in myself and don't think I need it. We'll see

For. Those of you playing along at home you'll remember that my new drug Jacavi (go on google it you know you want to...voyeurs!), is doing its job and I haven't had to worry about itching or night sweats since a few days after starting it. The major Side effect of reducing red cells has caught up with me 4 weeks ago but Doc Shoozenbootzen says that the body sorts that out and I should start to come up over time.

For the techno math folks I was down to 78 before getting two bags of blood and each bag is the equivalent of 10 in red cells so I should have instantly come up to 98 or there abouts and two weeks ago (two weeks after the new blood) I was at 101 so no drop in the two weeks. Which is excellent! I can't believe I have adjusted to the Jacavi that fast so it may just be an aboration.

Come to think of it having a blood cancer is an aboration - end of whine.

So the fact that I feel like I have lots of red is a good sign but I may be delusional.

Many of you will agree!

I'm booked to be a trainee crew member on the South Passage. It's a ship run by a sail training Org to give young people team building experiences. I'm going to volunteer with them and the gave me the opportunity right off the bat to fly up to Cairns and do a one weeks voyage around the islands off Cairns. I have a watch leaders manual that 300 pages of  sailing, safety, seamanship etc. I will be a long time before I'm a watch leader but It will be fun in the meantime. Check out my Facebook page for more info and photos from the first day sail I did with them.

More later
Chris