I made red cells this week! In a Telemedi appointment with the doc just now we found out that I went from 109 last week to 115 this week so that's brilliant!!!
But He says not to get too excited.
But that's brilliant!
okay be cool.
more later
Chris
Friday, August 31, 2012
Monday's are a good day
Okay lots of news so I'm making a list so I don't forget anything
Interfer with my life New symptoms
mondays best day
need red cells locally
now 12 weeks to know
What's the Bro doing?
Splinter and my new career as a sonogramist
TheBigKnock
Okay so lets get the whinging out of the way first. My three times weekly injection of Interferon is getting up my kilt.
The injection is superbly handled by Bluey each Monday Wednesday and Friday night and hardly hurts at all. But I'm starting to get some additional symptoms like dizziness on some days. Not so much that I can't function but it makes me feel off.
So because I get an extra day off ....Mondays before the injection are pretty good days.
I'm getting a referral to a local doctor that has admitting privileges at a local private hospital so that I can get infusions here. My last month I was up to 4 bags and had to do it over two days and that's a hassle not to mention I got down to 73 Hb count. That still allowed me to walk down to Lake Wobby and back but apparently it also triggers all the stories from the nurses about guys with counts of 40 and them being near arrest. I gather that having a certain amount of red cells is good for you and having not enough can be fatal. I don't mind mind myself you understand, its the nurses comfort I'm thinking of.
New Information: Dr. Shozeenbootzen thinks we need to go for 3 months before assessing my progress and possibly abandoning this line of treatment. He did say that at two months (a month from now) he will present my case to the transplant board to see what they say about DLI or another PBSCT
-------Now I won't keep coming back for you BUT I know we have a lots of new readers so her's a few of the basics
DLI Donor Lymphocyte Infusion = Taking some of my brothers angry cells and infusing them into me to ramp up my immune system to fight the Fibrosis in my bones.
PBSCT sometimes I refer to it as bone marrow transplant but it Peripheral Blood Stem Cell Transpant. they spin out my brothers marrow stem cells and inject them into me. Less painful for the donor.
My Marow is clogged up by my cancerous growth called MyleoFibrosis so the marrow doesn't make the right protions of Blood cells.
over 30 kinds of blood cells but the biggies are the Red cells, Whites and Neutripils (infection fighters) and Platlettes (plug the holes) I make an okay amount of Whites right now, platlettes are down a bit but I've temporarily stopped making Red. Yes gentle readers that IS not good.------
My donor, my Bro is going to be getting a call in a month or to see about maybe coming over for a return engagement with the apheresis machine. http://en.wikipedia.org/wiki/Apheresis. But they may send a scientist to collect the cells instead. All up in the air. May not be needed. Hmmm some people may find all these unknowns to be shitty....... but not me.... I thrive on unfulfilled expectation!
Hands up who just saw the mild sarcasm there. Good for you.
In preparation for going to Fraser Island at the beginning of the month I put a splinter into the back of my hand and into a vein. No it wasn't necessary to be disfigured for the trip but clearing the plywood out of the back seat was. I pulled the giant splinter out and got pressure on it immediately but I gather I didn't get all the particle out. I went to the Ultrasound Studio (they really are artists) and the nice gentleman looked into my skin. We found a 7 mm long fragment and then as he looked at the end view I said is that another one and sure enough he had missed a second smaller piece and thought I would do as a new Sonogramist. (Yes I know I made up a word but you know what I mean, don't you? Well then). Anyway I have an appointment to get it removed by a surgeon. Perhaps overkill but I do have immune issues so the doctors know best.
The Big Knock, my campaign to dominate the world or at least raise some funds for the Leukaemia Foundation is going very nicely ... Thank YOU very much.
We have done over 20 'knocks' and raised over $1000.00
Join by liking our facebook page
www.facebook.com/TheBigKnock
Then think of someone that you want to receive a baked treat and message me. Make a donation to the Leukaemia Foundation and we will find a home volunteeer baker near your loved ones and get them to bake a treat and deliver it.
Here's some pictures of knocks so far.
Wow Big post for a little guy but there you go
More Later, Chris
Interfer with my life New symptoms
mondays best day
need red cells locally
now 12 weeks to know
What's the Bro doing?
Splinter and my new career as a sonogramist
TheBigKnock
Okay so lets get the whinging out of the way first. My three times weekly injection of Interferon is getting up my kilt.
The injection is superbly handled by Bluey each Monday Wednesday and Friday night and hardly hurts at all. But I'm starting to get some additional symptoms like dizziness on some days. Not so much that I can't function but it makes me feel off.
So because I get an extra day off ....Mondays before the injection are pretty good days.
I'm getting a referral to a local doctor that has admitting privileges at a local private hospital so that I can get infusions here. My last month I was up to 4 bags and had to do it over two days and that's a hassle not to mention I got down to 73 Hb count. That still allowed me to walk down to Lake Wobby and back but apparently it also triggers all the stories from the nurses about guys with counts of 40 and them being near arrest. I gather that having a certain amount of red cells is good for you and having not enough can be fatal. I don't mind mind myself you understand, its the nurses comfort I'm thinking of.
New Information: Dr. Shozeenbootzen thinks we need to go for 3 months before assessing my progress and possibly abandoning this line of treatment. He did say that at two months (a month from now) he will present my case to the transplant board to see what they say about DLI or another PBSCT
-------Now I won't keep coming back for you BUT I know we have a lots of new readers so her's a few of the basics
DLI Donor Lymphocyte Infusion = Taking some of my brothers angry cells and infusing them into me to ramp up my immune system to fight the Fibrosis in my bones.
PBSCT sometimes I refer to it as bone marrow transplant but it Peripheral Blood Stem Cell Transpant. they spin out my brothers marrow stem cells and inject them into me. Less painful for the donor.
My Marow is clogged up by my cancerous growth called MyleoFibrosis so the marrow doesn't make the right protions of Blood cells.
over 30 kinds of blood cells but the biggies are the Red cells, Whites and Neutripils (infection fighters) and Platlettes (plug the holes) I make an okay amount of Whites right now, platlettes are down a bit but I've temporarily stopped making Red. Yes gentle readers that IS not good.------
My donor, my Bro is going to be getting a call in a month or to see about maybe coming over for a return engagement with the apheresis machine. http://en.wikipedia.org/wiki/Apheresis. But they may send a scientist to collect the cells instead. All up in the air. May not be needed. Hmmm some people may find all these unknowns to be shitty....... but not me.... I thrive on unfulfilled expectation!
Hands up who just saw the mild sarcasm there. Good for you.
In preparation for going to Fraser Island at the beginning of the month I put a splinter into the back of my hand and into a vein. No it wasn't necessary to be disfigured for the trip but clearing the plywood out of the back seat was. I pulled the giant splinter out and got pressure on it immediately but I gather I didn't get all the particle out. I went to the Ultrasound Studio (they really are artists) and the nice gentleman looked into my skin. We found a 7 mm long fragment and then as he looked at the end view I said is that another one and sure enough he had missed a second smaller piece and thought I would do as a new Sonogramist. (Yes I know I made up a word but you know what I mean, don't you? Well then). Anyway I have an appointment to get it removed by a surgeon. Perhaps overkill but I do have immune issues so the doctors know best.
Join by liking our facebook page
www.facebook.com/TheBigKnock
Then think of someone that you want to receive a baked treat and message me. Make a donation to the Leukaemia Foundation and we will find a home volunteeer baker near your loved ones and get them to bake a treat and deliver it.
Here's some pictures of knocks so far.
Wow Big post for a little guy but there you go
More Later, Chris
Monday, August 20, 2012
Hmmmmmm
I needed four bags of packed red cells. New record low at 73 unverified results were 67 and that freaked people. 73 is still low enough the nurses started telling their low Hb stories. So I'm guessing that I'll have to get blood locally in between brisbane trips. Bluey is not happy about that as I will have to surrender to yet another Dr.s input and that means that Doc Shoozenbootzen has less mojo over me and she trusts him so much. More talk of going straight to transplant if Interferon doesn't work. Starting talking about where to live in Brisbane if we have to move again.
But put the sisters on the plane that was nice.... That they were here not that I put them on the plane!
More later
Chris
But put the sisters on the plane that was nice.... That they were here not that I put them on the plane!
More later
Chris
Monday, August 6, 2012
Balancing Blood
So last week I was down a bit of red cells and my next video chat with Doc Shoozenbootzen is next Friday when I will be on Fraser Island for my birthday trip. So I'm having to have a special blood test on Tuesday so that we have enough time to talk to the doc and organise a transfusion if required BEFORE I leave the mainland. I'm guessing the the blood service people, who are wonderful and the local hospital people, who are unknown at this point may not see my trip to the island as part of THEIR priority. Hey people its my 60th and I'll need that blood so I can rage on. Okay to be truthful i'm not sure how much raging is really going to happen but just the same.....
"Wishing I was knee deep in the water somewhere, thinking 'bout the blue sky breeze, my only worry is the tide gonna reach my chair".....Jimmy Buffet
more later
Chris
"Wishing I was knee deep in the water somewhere, thinking 'bout the blue sky breeze, my only worry is the tide gonna reach my chair".....Jimmy Buffet
more later
Chris
Saturday, August 4, 2012
Inter-NO Fear- on
Okay I've had 6 injections and they don't hurt much and after the first one I don't have very much reaction either. My skin is getting a little bit itchier but than could just be the cold dry weather we are having, now. so all in all its good I'v had two blood tests and my liver and kidneys are still good but this second one I dropped to 97 heamaglobin. Nothing to panic about but its not a trend we like, at the current rate I may need a top up of packed red cells at next trip to brisbane. This is getting to be a pattern. 6 weeks ago I got two bags two weeks ago I got 3 bags so in two weeks how many bags do you bet I'l need?
Here's the problem though, I'm going over to Fraser Island in a week for my 60th Birthday party trip. I'm thinking I want to rage on but being down in reds means I'll be raging from my napping spot. Not what I had in mind but sure beats the alternative.
more later
Chris
Here's the problem though, I'm going over to Fraser Island in a week for my 60th Birthday party trip. I'm thinking I want to rage on but being down in reds means I'll be raging from my napping spot. Not what I had in mind but sure beats the alternative.
more later
Chris
Subscribe to:
Posts (Atom)