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.
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Here's some pictures of knocks so far.
Wow Big post for a little guy but there you go
More Later, Chris
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