Well its about red cells so it can't be called the Blues. ... But then red heads are called bluey here so..
Anyway the docs are puzzled. I was down in red cells Thursday so got blood organized for Saturday. Blood test then showed I had dropped another 10 between Thursday and Saturday. They are looking for places I'm leaking!
I'm thinking it errors in testing etc. but will be watching for leaking this week.
more later
Chris
Sunday, November 25, 2012
Thursday, November 22, 2012
need red cells
So last Friday Doc Shooozenbootzen mentioned that the protocol for my Lymphocyte infusion will be a bit different. Usually you get a bit wait a month get a bit more wait a month get even more...bigger doses each time.....
Because I tolerate the intragram I get monthly and I tolerate the packed red cells I get from time to time, really tolerate them well; I'm getting all the Lymphocytes in one go!.
That's got to be interesting?
Also last week my blood wa down a bit more then we usually see at this time in my cycle so he got me to do a blood test last tuesday and Skype him Thursday, today. I'm down even more and it won't wait till next week so I'm going down Friday Arvo for blood on Saturday at 8:00am. This is good because I won't need as many units and that will be lest time in the chair and I'll feel more puff a week earlier.
Our Friend the Rain Goddess is over visiting from Canada and her boyfriend the physicist is coming early in Dec so I want to be full of the Reds so I can go up to Hamilton island and play.
Taking more naps lately so I can be active. That sounds like a non sequiter for sure.
Queensland Leukaemia Foundation has organised an interview about the Big Knock and my story with the Courier Mail, if they pick up the story. I'll keep you posted.
More later
Chris
Because I tolerate the intragram I get monthly and I tolerate the packed red cells I get from time to time, really tolerate them well; I'm getting all the Lymphocytes in one go!.
That's got to be interesting?
Also last week my blood wa down a bit more then we usually see at this time in my cycle so he got me to do a blood test last tuesday and Skype him Thursday, today. I'm down even more and it won't wait till next week so I'm going down Friday Arvo for blood on Saturday at 8:00am. This is good because I won't need as many units and that will be lest time in the chair and I'll feel more puff a week earlier.
Our Friend the Rain Goddess is over visiting from Canada and her boyfriend the physicist is coming early in Dec so I want to be full of the Reds so I can go up to Hamilton island and play.
Taking more naps lately so I can be active. That sounds like a non sequiter for sure.
Queensland Leukaemia Foundation has organised an interview about the Big Knock and my story with the Courier Mail, if they pick up the story. I'll keep you posted.
More later
Chris
Tuesday, November 13, 2012
Timeframes
Well I had a long phone call with my brother the donor today. He has a number of things going on and would rather come in the second week of January. If they want it sooner maybe a scientist would go over and collect the cells. But if required he would come over in December. I'm leaving it up to the transplant co-ordinator and my doctor to sort out.
I did find out what the protocol is for Donor Lymphoscyte Infusion.
the Bro will be here for almost a week doing blood tests other tests and physicals (some more done before he gets here). There is a pile of paper work to do as well. Then the day they take the cells he is in a chair for many hours and at the end of the time I get my first infusion. They frezze the next three infusions and I get them every 4 weeks for 4 times. I should get Graft Vs Host Disease after the second or third infusion and depending on the severity, the program stops then. Then they get me coasting with GVHD and that takes out the fibrosis in my bone marrow that is keeping me from producing good blood.
Cross you fingers
More later
Chris
I did find out what the protocol is for Donor Lymphoscyte Infusion.
the Bro will be here for almost a week doing blood tests other tests and physicals (some more done before he gets here). There is a pile of paper work to do as well. Then the day they take the cells he is in a chair for many hours and at the end of the time I get my first infusion. They frezze the next three infusions and I get them every 4 weeks for 4 times. I should get Graft Vs Host Disease after the second or third infusion and depending on the severity, the program stops then. Then they get me coasting with GVHD and that takes out the fibrosis in my bone marrow that is keeping me from producing good blood.
Cross you fingers
More later
Chris
Saturday, November 10, 2012
DLI
We had a 3 minute Skype call with the Doc and he had no blood results but had the decision from the transplant team. On to Plan B and that was to do Donor Lymphocyte Infusion (DLI ) with my brothers Lymphocytes but NOT take his T-Cells(the ones that are used for Bone Marrow Transplant ,BMT) again. If the DLI doesn't work then we would move to Plan C variation 2 which is a BMT with a registry donor, not The Bro. This is because we are too compatible, it appears. Who knew?
DLI is way less invasive, way more compatible and way less likely to make me feel sick. So bring it on! We asked when this might take place and got told to talk to the Queen of Transplants, so will call her Monday and let you know what time frames we might be into.
The Rain Goddess has arrived from Canada and the drought has been broken once again. She heard I was in here doing a blog entry and offered this gem of advice. "Don't use Acronyms and when I type out the medical term it doesn't make it any clearer." So I'm going to do a page attached of terms because I thought that if I explained DLI every time I want to write DLI you would get BORED TO DEATH. And I thought that if you do a search on the blog you will find every term has been defined at least once. But see what a good thing feedback is!
If you don't understand something Please feel free to make a comment and I'll explain. I can't make sense to you if I don't get feedback on what's NOT making sense.
more later
Chris
DLI is way less invasive, way more compatible and way less likely to make me feel sick. So bring it on! We asked when this might take place and got told to talk to the Queen of Transplants, so will call her Monday and let you know what time frames we might be into.
The Rain Goddess has arrived from Canada and the drought has been broken once again. She heard I was in here doing a blog entry and offered this gem of advice. "Don't use Acronyms and when I type out the medical term it doesn't make it any clearer." So I'm going to do a page attached of terms because I thought that if I explained DLI every time I want to write DLI you would get BORED TO DEATH. And I thought that if you do a search on the blog you will find every term has been defined at least once. But see what a good thing feedback is!
If you don't understand something Please feel free to make a comment and I'll explain. I can't make sense to you if I don't get feedback on what's NOT making sense.
more later
Chris
Friday, November 9, 2012
I found out! its Beethoven's Fifth.
Not his fifth drink silly. His symphony.... the first four notes of his symphony are the tones to indicate dread.
da da da daaaaa.
Got it now?
Today is the day I find out what my life will be like in the next year or so.
Sort of like waiting to hear about a job or waiting to see if you got into Uni. Or a bit bigger than that I guess. You know you are up against it when in all those other situations, if if comes out wrong you say "Well, at least I've got my health"..... hmmmm.
Have to find out what time my Skype call is this arvo.
The good news of the day is I have rented a dingo!
more later
Chris
da da da daaaaa.
Got it now?
Today is the day I find out what my life will be like in the next year or so.
Sort of like waiting to hear about a job or waiting to see if you got into Uni. Or a bit bigger than that I guess. You know you are up against it when in all those other situations, if if comes out wrong you say "Well, at least I've got my health"..... hmmmm.
Have to find out what time my Skype call is this arvo.
The good news of the day is I have rented a dingo!
more later
Chris
Monday, November 5, 2012
What I find out when I'm asleep... or am i asleep?
Okay sedation is a weird thing... I think I'm asleep but apparently I'm hilarious so this time I asked the Doc for a cartoon hammer so he could knock me out, and I tried to get my phone out of my pocket and Bluey had to restrain me cause I wanted to record what the doc was saying. That was a good idea, Out of It Chris. Because you have no idea what he said until Bluey feeds it to you over the next couple of days!
So here's what he said (but I won't be able to swear to it!) First off he had trouble getting the tube drilled in and through out his shoulder. Discussion at the time about his lifting weights, discussion after with Bluey about getting him to work on the other side because of the room layout he always picks the right hip.
He got the sample and they took extra blood to do a Klienerism test to see if my donor's cells are still there. If there is enough of Rick's cells then if would be worth getting him over and taking his Lyphocytes for the DLI and then keeping him here for a week and harvesting his T-Cells and freezing them for a BMT later.
If there are no enough of Rick's cells then its not worth doing the DLI and that in turn means its not worth bringing Rick and they would find a registry donor to do a BMT in 3-4 months. That's the timeframe due to waiting lists.
So he said we should plan to enjoy Christmas and to travel but not overseas. I might get DLI before Christmas, but that is just an injection when I'm at the clinic. We won't know about any decisions until next Friday at the Skype call.
So my life may be complicated again. We are starting to think about where we could live in Brisbane in Feb,March,April and on for 6 months. Bluey will once again be the super hero and I will just sit around doing what I'm told.
There are a whole bunch of question about the different donor but I will leave of the line until we know thats what is planned.
Hope that helps keep you all in the loop. Sorry I haven't got this down sooner but it all could just be a dream.
More Later
Chris
So here's what he said (but I won't be able to swear to it!) First off he had trouble getting the tube drilled in and through out his shoulder. Discussion at the time about his lifting weights, discussion after with Bluey about getting him to work on the other side because of the room layout he always picks the right hip.
He got the sample and they took extra blood to do a Klienerism test to see if my donor's cells are still there. If there is enough of Rick's cells then if would be worth getting him over and taking his Lyphocytes for the DLI and then keeping him here for a week and harvesting his T-Cells and freezing them for a BMT later.
If there are no enough of Rick's cells then its not worth doing the DLI and that in turn means its not worth bringing Rick and they would find a registry donor to do a BMT in 3-4 months. That's the timeframe due to waiting lists.
So he said we should plan to enjoy Christmas and to travel but not overseas. I might get DLI before Christmas, but that is just an injection when I'm at the clinic. We won't know about any decisions until next Friday at the Skype call.
So my life may be complicated again. We are starting to think about where we could live in Brisbane in Feb,March,April and on for 6 months. Bluey will once again be the super hero and I will just sit around doing what I'm told.
There are a whole bunch of question about the different donor but I will leave of the line until we know thats what is planned.
Hope that helps keep you all in the loop. Sorry I haven't got this down sooner but it all could just be a dream.
More Later
Chris
Friday, November 2, 2012
my Blood screaming from my body when I come down here!
Okay its weird. I was at 124 Three weeks ago. Normal levels of red cells.
Two weeks ago I dropped to 114... big jump for a week but still not bad. One week ago -104, still good but its down a bit. Then two days later it 102 ....Wednesday its 94 Still like it nice an high for the trip down to brizzy and I FEEL like its high so looking good for Today. In fact we cross matched for three units and I'm skaiting that I may only get one or two units today. Blood comes back and in two days I have dropped to 80. Around here that known as double crap piss poor.
So I got the two units they pulled for me today and I have to get another unit tomorrow. Besides Bluey has the signs of flu so we have abandoned plans to join family and friends at the Boona Pub for dinner. I will get my blood at 9.30 and then we head down to Boona to celebrate the engagement of Gabe and Joe.
Add to all that the doc threw out his shoulder getting the bone cut done and the marrow was sticky. I will get the news of results and the hospital board plans for me next Friday. But its looking like trying the DLI first then a transplant early next year.
more later
Chris
Two weeks ago I dropped to 114... big jump for a week but still not bad. One week ago -104, still good but its down a bit. Then two days later it 102 ....Wednesday its 94 Still like it nice an high for the trip down to brizzy and I FEEL like its high so looking good for Today. In fact we cross matched for three units and I'm skaiting that I may only get one or two units today. Blood comes back and in two days I have dropped to 80. Around here that known as double crap piss poor.
So I got the two units they pulled for me today and I have to get another unit tomorrow. Besides Bluey has the signs of flu so we have abandoned plans to join family and friends at the Boona Pub for dinner. I will get my blood at 9.30 and then we head down to Boona to celebrate the engagement of Gabe and Joe.
Add to all that the doc threw out his shoulder getting the bone cut done and the marrow was sticky. I will get the news of results and the hospital board plans for me next Friday. But its looking like trying the DLI first then a transplant early next year.
more later
Chris
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