We're home!

yep we got here safe and sound and and are settling in. We are back online at sirruscomms so if any of you were using the short cut or were using the reply button to emails please check to dumpr any thing that has aapt in it

our email is artsbase@cirruscomms.com.au

more later
Chris

We're moving back to hervey Bay!

It's day 104! I have finished all my tests, although I haven't got all the results back. We will be seeing Doc Schoozenbootz on July 6th, a week tomorrow to get final results and in his words "kick my scrawny ass out of Brisbane". We were all set to go this Friday so we got the doc's okay to go to HB for 6 days and come back next Thursday for the big send off. We've packed up all our stuff and Gene will bring the truck Tommorow early and then after i do clinic with replacement doc then we load and go.

Callum and Shinny are coming as well so we will have two vehicles, a dog, Joyce and I..... a big party all the way to HB!

I'm feeling a little tiried but I am down to the wire re my red cells and I think I may be getting some tomorrow which will put a snag in things but I was 96 last tuesday and doc wanted to wait till Friday to see if I grow some of my own. The treshold has been 100 outside of hospital and 90 while in the hospital but inside they have better access to me and more checks. We'll see what's the go tomorrow.

Bluey has been a little trooper these past few days working to get us packed. I did my part but she was excellent. We discovered we do have two different styles of packing and because we started early we had time to 'take time' and we discussed how we approach it. She's a drift around and put like things together kind and I'm a get an entire room in one box kind of packer.... but we had fun! We went out and got "one last round"of boxes about three times. Where did all this stuff come from! Callum was here for the day today and he was a treasure in the final day of packing we easily got it done. I just have the computers and broadband to pack and then we're good to go.

We will be offline for about 24 hours so our mobiles will be the way to get us +61418 182 205 for me and +61418 287 991

We have a big July 1st planned at the Wright Mckays Sunday and Karen and Chris from Sydney are staying over with us Sunday night talk about getting back in to the swing! Joyce starts back to work on Monday.

more later
Chris

100 days

It was actually yesterday but we had such a nice leisurely day I didn't think to blog it. It has indeed been 101 days since I received my bone marrow transplant. Although I don't remember much as I was hopped up on drugs, appearently I was a lot of fun. Well here we are 101 days later and I am remembering lots of things.

We got up lateish and a quick breakfast in, then dawdled along and went out to Butter for brunch then we jumped on the ferry and went down river to Sydney Street pier then walked along the River Walk back to the city. Ferried back and hung out. Bluey did a great (new signature dish) mushroom sauce on nokie (sp) with medalions of Chicken grilled in garlic. It is sooooo good! Then a bit of TV. What great way to spend the 100th day.

I'm so lucky that Joyce is able to be here to help me through this. She is so good at her job they had no second thoughts giving her 5 months off to care for me. She is strong about making me take meds I don't like including water every ten minutes. She can drive like the wind and get me to the clinic in record time while I'm raving with a temp of 40 degrees and not panic or be anything but totoally calm and reassuring. She can wait and wait and (wait for it)...................wait with me at the doctors offices all the while inventing new ways to amuse me. Have I told you latelly how great Joyce is?

Thanks Joyce, I love you

lots and lots more later
Chris

No more cramming for the end of days exams!

I have started the end of days tests! Did big bloods on Tuesday at the hospital then gave more blood at the clinic. I felt seriously depleted as the usual test is three or four tubes and the final is about 12 so that's 16 for the day!

Doc Schoozenbootz gave me a "good....very good" on my bone marrow biopsy that I did last week. I still have to get the results of the DNA test (one of the 16 tubes) to see if it is MY good...very good, or RICK'S good....very good. he went on to say he wants us to see him after his holiday before he discharges us so that was adding a week to our stay. In a late development we phoned him back and asked if I could go to Hervey Bay for 6 days (he had previously said we could go for the weekend) and he said yes! So we are basically on track and this is the track.

-------you crazy jump around guy, you haven't finished with the whole doing exams metaphor! Clean that up!

Okay I did my skin exam yesterday and they took three biopsies this time. And because I have such dry skin they have ramped up, by one, my skin disease diganosis. For those of you playing along at home, you'll remember that when I went in the first time Doc Mole said I had a minor disease called Ixthyansis Vulgaris (sp) and now since I look like a giraffe.... no kidding that's my leg in the picture....I have an equally benign but "far more rare" disease call X-link Ixthywhatever. And get this, he wants me to smear myself with Petorleum Jelly! The Pharmasist couldn't keep a straight face as she told me I should put it on several times a day. I'm thinking a Greased Chris contest will be added to the July 1st games!

I also did my ECG and chest X-ray yesterday. So all I have left is my dental exam and deep breathing test next Wednesday.

-----okay now back top the track

We finish up tests next week and pack then Gene comes down with the truck on Friday and we load up then we drive in convoy back up to Hervey Bay. We have a big whoop-up for July 1st Canada Day. Then we come back for Friday to get the final results. Then we come back every fortnight to see the Doc and get intragam. etc. then at some point we start coming every month.

In September he will start reducing my cyclosporin and I have a 50/50 chance of getting chronic GVHD at that time. I may have to go back on cyclosporin for longer. I won't be returning to the high school till after a check in January; my imune system is still down and won't be coming up till at least September and he wants me to not take any chances on infection.

So we have a busy week coming up and Jo is staying with us Tuesday as she is in for a meeting, so it will be a whirl wind week.

more later
Chris

End of 100 days...its coming

How melodramatic is that title. Where does he get this schlock from!

It is now day 92; yep its been 18 weeks, 1 day, 8 hours, 46 minutes, and 39, 40, 41, seconds, but whos' counting!

We got a phone call with some news but before that let me tell you what happened when we went to clinic yesterday morning and got some news. Oh but before that let me tell you about the rest of this week. Well lets do a recap to catch everyone up.

Last Friday I got intragam as ususl but there was an infection in my catherter so I had a wee 'septic shower'. Missed all but 10 minutes of a movie. Got a temp of 40 in 1.5 hours. went to hospital, got out on Tuesday to get my bone marrow end of days test. Got out on Wednesday to get my Hickmans's removed at my 4th hospital. got another little shower and was back in emerg. but I took oral antibiotic and was sent home. I'm feeling much better now!

I can be even more succinct..
Temp. Hospital biospy 4th removal minitemp emerg. betternow.

Is that clear? Good!

So Friday we went into the clinic to have my bloods done and get my weekly intragam and see Schoozenabootz, there was some tripidation since last week it was the scene of my temperature. Anyway the staff were all joking with me and glad to see I was doing well so it was cool. Bloods were good I am even holding up the red cells a bit more, That is I am producing more of my own red cells so I will need less transfustions I guess. The bone marrow Biopsy results will be available next, Tuesday so we will know something then. the doc says things are looking good,

Then we called the tranplant coordinator's office and talked to the woman who is organizing the final tests and she apologized that she hadn't done anything on it then as she had several incoming tests to organize and I understand how that would be priority. So we thought it would take her days to get it sorted but she called back in an hour to say that some tests were going to be next week and some the following week. then called back in two hours to give us all the appointment times done and dusted, home and hosed.....all wrapped up!

So here's the final days schedule (until someone changes it).
Test my blood Tuesday. test my heart and the x-ray anytime next week. test my skin Wednesday. then have to wait till the following week's Wednesday for the dental check and my deep breathing check. Then I might see the registrar on Thursday I guess and see Doc Schoozenbootz Friday AM. Gene is coming down with my tray back ute Friday the 29th in the AM and we pack up and are gone that day!

Two weeks to go! And I'm smiling and joking and feeling really good. My knees feel strong, there is no (read zero) pain in my feet. I'm back up to my 'normal weight' (which is in fact to high!) Things are looking good.

Visited with Bev last night and Callum and Anne are coming for lunch, Dinner at Bev's where I can help her with her iRiver (get her music onto the thing). No plans yet for Sunday but I think a big walk with maybe a picnic would be good but we'll see.

more later
Chris

Big Time, Big Temp, Big Worry

Sorry I haven[t blogged for a bit but I was held up up a bit.

Friday at the clinic I had my regular intrgam infusion and as sometimes happens because of the cold IV and the cold room I get the shivers a bit. Usually a blanket and a walk aroune after fixs this. But I was still shaking as bluey I I went to a morning movie. We barely got seated ans the lights down when I realized that not only could I not stop the shakes but I was feeling hot flashes and was feeling ill in my tummy. So we left the film 10minutes into and were back at the clinic in an hour after I left. I was immediately slapped down and poked etc. and found a temperature of 40 degrees! I was 36.5 an hour and half earlier! that fast. They took blood cfor cluturing and send me up stairs to a bed in the hospital. I started vomiting and halucinating (something about Joyce's tap shoes). I was r=pretty rough for the afternoon and evening but settked to sleepa nd at midnight obs the temp was down to normal. I've been on IV antibiotics since.

Feeling fine now and I had my bone marrow biospy today as scheduled as part of the finalization so that was good. They have figured out that the infection is in my hickman's so that is coming out tomorrow afternoon at my fourth hospital! where they could get theatre space on short notice. I;ll be getting a canular each time I go to clinic from now on or maybe a PiCT line. smaller than a hickmans and goes in from the arm. We'll see.

so Bluey was really really scared but stood up wellunder pressure and now we know why they wanted me within 20 minutes of the clinic/hospital. But they know the bacteria invlovled and they are using a targeted antbiotic so I get out of here straight from the day procedure of removing my hickman's Wednesday afternoon.

Just a note Jo and Gene's russian Terriers gave birth a week ago and one of them is destined to come to us we hope, and they are doing well.

more later Chris

Why do I seem to do things the hard way

I learned about blood types the hard way today. They gave me between 50 and 100 mls of the wrong blood. Obviously the usual catastophic results didn't occur because I don't get whole blood I get red cells and the problem is in the whole blood part.

Today's lesson is blood types:
Okay it's really simple.... first off lets remember the disclaimer, say it with me," I don't know nothin' about birthin' babies." Now back to our broadcast.......most people are in one of four blood types or groups They are called groups because there are a whole group of things to do with it but we will look after the big part only.

'A' means that you have A type antigens attached to the red cell and antibodies for B in your plasma around the cells. B is the reverse. Still with me. "O" are the heros of the blood transfustion world because they have no antigens on the red cells just A& B antibodies in their soup. AB folks have both kinds of antigens and no antibodies in their soup. There you go. What's that?........why do we need to know this?......... Its obvious isn't it?....No?

Okay I usually get "O" because I only get the red cells as most of the plasma is taken away in processing, leaving cells with no antigens to react with the antibodies in my existing soup. You see my old blood type is B and my new blood type *Rick's type" is A so I guess I have both antibodies floating around waiting for some poor type A or Type B red cells to float by.

It can't be an obvious thing as the nurses thought nothing of giving me type B blood as my chart says my type is B. I said isn't that interesting I ususually get type "O". Anyway 100 mls in or so the nurse quietly stops my transfusion and says we are checking into your second bag for today. You see I ususally get two bags but only one arrived so the lab went looking for a cross matched second bag and the lab tech caught the mistake as we started the first bag. Two new bags arrived both type O and we got going again. The doc on call talked to us later and explained the chart and why it was a dangerous thing but probably not so worring to me. You see if whole blood of A and B mix you get all the wrong antibodies jumping on the other antigens and clots occur killing the host. Worst case.

In my case the B I was given had small amounts of anti bodies for A in it as there was not very much plasma. I'm not producing very much new A red cells with the A antiagen which the aforementioned antiA antibodies would be hunting for. With me so far. On the other side of the blood forest the small amount of B antigen Red cells given me had not much to fear as my old antiB antibodies are few and far between. so if I don't have much Red cells with A on them and I don't have much red cells with B on them. What do I have.

I'm filled with Red cells that are O, from the five or 6 transfusions so far and the red cells have no antigens on them! Wahoo. So where are the A and B antibodies usually associated with type O people??? I guess I didn't get any as there was no plasma to speak of in those transfusions. But why haven't I developed some of my own antiA or B antibodies???

Hello people!!!!! I'm imuno-supressed. I'm not anti anything. I'm not against As or Bs, I'm not against germs, I'm not against bacteria, viruses,molds or spores. In fact if I'm not careful any bioagent you can name can come and live here in my body for free........Including some stray red cells from my old pal type B blood. Now as soon as my new pal Type A blood gets off his ass and starts making more redcells in his image...then we could have some good old imune reactions but not for the time being.

Question: Does all the plasma that is drained away from the whole blood go to TVs?

more later,
Chris

Oct 06 to June 07

See there is hope for my hair yet!