My kidneys are "the best they've been"

2 week old Black Russian Terrier puppies! They are 6 weeks old now and really cute, Three girls and a boy. Jo and Gene are really happy.

For those of you playing along at home you know that my kidney function has been less than perfect (shitty in fact for a couple of weeks) and this was/is because of the imunosuppressant that I take. But we lightened up on the IS about 4 weeks back and last Friday's call from Doc Schoozenbootz was good. Still making my own red cells, they are up a bit further. And he said my kidneys have improved alot. See quote in title above.

So I still have to get off the IS drug and hopefully won't get GVHD, which would be the chronic kind at this late stage. Doc says I have a 50/50 chance but I rekon that as I get lower and lower levels of IS drug then my odds have got to be increasing. Anyway We're going to Bribane to see him next friday Aug 3rd so will report .....

more later.

Chris

I'm making my own red cells now!

well that title pretty much says all the news so .......

Just kidding! A couple of weeks ago when we came back from Brisbane my red cells were at 96 (normal is 140 tranfustions usually happen if I get below 100). Doc Schoozenbootz said i wasn't getting a transfusion as we were close to the time when my red cells are supposed to kick in. I did a blood test a week ago last thrusday but didn't hear from him and then last Thursday and talked to him on Friday. He says the previous week I was at 102 and this week at 113 so I'm seriously on my way. He says my kidneys are okay as well.

Day 129 now, and the the red cells kick in at day 120 ,we were told, so I'm right on schedule. The red cells are the last to kick in so this is a pretty big milestone. The doc still hasn't seen the DNA results to make sure that it the new cells are doing the work now, but he's pretty confident. I have a more sceptical approach and figure that it's not over until the 'fat cells sing'. Or something like that.

Okay fort those of you keeping score. the final milestones were and are.
*get red cells kicked in
*I'll take DNA results for 100, Bob -'What are my NEW cells' ........is the correct response!?
*get off the immune supression drugs - currently down to 5/8ths of what I was taking when I left hospital
*don't get GVHD - Oh come on you can't have forgotten already what that stands for! Say it with me...Old kids help the new kids... Graft Versus Host Disease. At this point if I get it now it means it will be the chronic kind and I have a 50/50 chance at this point.
*get Schoozenbootz to sign me off in about 4to six months.

pretty good eh! doc says that i haven't been reading the book on how to be a patient as i'm breaking all these records. Bluey i pretty happy too.

more later
Chris

115 days on 07/07/07

Well I have lots of little stuff to report and catch you all up on our movements over the week.

We had a great time at the July 1st Canada Day event at the Mckay-Wright's. (shown) That night we met a friend of our friend Jerry McNamara, from Sydney. Karen and her boyfriend Chris were up for a conference and came to dinner on Sunday. It was big fun and nice to be able to host someone in our home again. Monday Joyce went back to work and I took a total break. Tuesday and Wednesday I did a bunch of unpacking and errands. Thursday we travelled back to Brisbane to see the doc on Friday.

Sian and Callum came up with Gene and the truck last Friday and went back with us on Thursday. It was a great but quiet trip back. We had a nice dinner with Bev at the local and then on Friday did the inspection of our old unit and then got intrgram at the clinic and saw Doc Schoozenbootz.

He told us I was doing fabulous. he hadn't seen me inthe past two weeks due to his time off and he thought my hair growth was the best for this time in tranplant process. He didn't give me the reuslts of the DNA test but will later when he gets them off the other computer system. I'll get a blood test on Thursdays and he will talk to me Fridays but I won't go back to him for 4 weeks! We though it was going to be fortnightly but he's gone straight to monthly! he is a little concerned that my kidneys have started performing poorly and has dropped my cyclosorin a little bit. this is the immune system supression drug. I'm now at 5/8ths of what I was on when I came out of the hospital and will over time go to zero (I hope). Anyway this should improve kidney performance and that produces more IPO or EPO which in turn triggers more red blood cell production and that's the last cells that a tranplantee starts to grow themselves.

Anyway the next week bodes well for a commercial bath for Chilli, more truck driving for me, unpacking the last of the boxes and a big big sweep out of stuff. Both Joyce and I have come back with a plan to clear out "stuff" from our life. We have too much stuff and are anxious to reduce beforw we move to a new house.

Our plans are for me to take this time of inforced non work to drive forward the house. I'm doing research on solar electrical systems, solar hot water, energy efficient stoves, funky louver walls, selling solar electrical back to the grid, recyled water systems etc. We get our plans from the steel homes company shortly then take them to the local draughtsman to add windows etc. then on to council for approval.

more later
Chris

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