So we are down for my 4 weekly Intragamm treatment and my red cell count is down to 86. Thats well lower then last time at 92 and below the magic threshold of 90 So I'm now cooling my heels waiting for a bag of blood.
This is more than a little dissapointing since my reds are down because of the treatment for my kidneys and not any fault of my own. In fact I'm getting a twice weekly injection of IPO to promote red cell production. So the downward agent is working and the upward agent is not.....yet!
Because my blood is part mine and part my brothers it takes a lot of time for them to crossmatch the blood and then it comes across town and then it takes and hour and half to decant it into me.
Makes a long time in the chair. To add insult to injury I'm still on a saline flush to keep the vein open so trips to the toilet are increasing.
As my young acquaintance Coen Ashton says "better 5'6'' above then 6' under".
more later
Chris
Friday, August 28, 2015
Monday, August 3, 2015
Camperdown capers
Bluey is at the Brain Institute at U of Sydney. Lets just avoid my potentional hurt by refraining from further jokes. Feel free to make up your own in your head now.
I'm at loose ends in a 'lovely' coffee shop beside a 'delightful' park. The people all around me a tapping away on their various laptops/tablets etc. so I'm right at home here.
So last week, dear reader, I went to see the PA Hospital Renal clinic for a second opinion really. The docs talked about a new treatment with a heaver duty immunosuppressant. but its not to be taken lightly and not if Doc Shoozenbootzen objects. but in the end they said the current Immunospressant was doing some good and in fact should be allowed longer to work. It does have the side effect of lowering my red cell count. Talked to the big Boffin after the PA and he agreed and we are marching on with me being half crap but stable.
Did pickup a bit of new info on the big picture. My kidneys are functions at 35 to 45 percent capacity but the average renal patient does get dialyisis until they are at 5%. so thats good.
Saw Doc Shoozenbootzen at the end of the week for my regular top up with Intragamm. He's put me on Aranesp to boost my red counts and then we will just cruise along I think.
On related note, two separate but connected things happened. An old friend connected me to a teacher friend so that I could go to her class to talk about being a recepient of blood products. The class is doing a unit on Service to the communtiy and has decided as a group to donate blood so I just gave a face to where it goes.
And the local Red Cross called up to get me to speak as a fill in at their annual donor thank-you event. I was going to be in Sydney with Blluey so couldn't but as we have a few of us recepients in Our Little Group, I got a young 19 year guy to speak instead. They were pretty thankful we got it sorted for them at the last minute.
I'm alway happy to talk about 'my story' to anyone who listens. It's a service I can give that may providse some knowledge or understanding. Its a little thing to give back for all the support the hospitals, clinics, blood service, Docs etc. have given me. I've even been know to sit in a cafe 'talking' to the ether!
more later
Chris
I'm at loose ends in a 'lovely' coffee shop beside a 'delightful' park. The people all around me a tapping away on their various laptops/tablets etc. so I'm right at home here.
So last week, dear reader, I went to see the PA Hospital Renal clinic for a second opinion really. The docs talked about a new treatment with a heaver duty immunosuppressant. but its not to be taken lightly and not if Doc Shoozenbootzen objects. but in the end they said the current Immunospressant was doing some good and in fact should be allowed longer to work. It does have the side effect of lowering my red cell count. Talked to the big Boffin after the PA and he agreed and we are marching on with me being half crap but stable.
Did pickup a bit of new info on the big picture. My kidneys are functions at 35 to 45 percent capacity but the average renal patient does get dialyisis until they are at 5%. so thats good.
Saw Doc Shoozenbootzen at the end of the week for my regular top up with Intragamm. He's put me on Aranesp to boost my red counts and then we will just cruise along I think.
On related note, two separate but connected things happened. An old friend connected me to a teacher friend so that I could go to her class to talk about being a recepient of blood products. The class is doing a unit on Service to the communtiy and has decided as a group to donate blood so I just gave a face to where it goes.
And the local Red Cross called up to get me to speak as a fill in at their annual donor thank-you event. I was going to be in Sydney with Blluey so couldn't but as we have a few of us recepients in Our Little Group, I got a young 19 year guy to speak instead. They were pretty thankful we got it sorted for them at the last minute.
I'm alway happy to talk about 'my story' to anyone who listens. It's a service I can give that may providse some knowledge or understanding. Its a little thing to give back for all the support the hospitals, clinics, blood service, Docs etc. have given me. I've even been know to sit in a cafe 'talking' to the ether!
more later
Chris
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