I called the best practise Nurse in the universe and she told me that I'm at 88 and they will book me for blood tomorrow. Except I'll be held up because the test I did yesterday, in order that the blood, if required , would be waiting for me, was done incorrectly! so that adds about two hours on to my wait time at the clinic tomorrow, because they have to wait till I get there then take blood and send it off for cross match and be tested and matched to the blood stocks so I get the best stuff.
The name of this testing facility shall not be named but their name is sort of like a operetta group in England. If the current government gets back in they are planning on making people pay for their own tests and if that happens a lot of us 'regular' users are going to have to cough up thousands and thousands of dollars in a year. The ONLY good in that is that the testing service that is fat and happy and slack will have to start dealing with patients like me who are going to be wanting better service.
Don't get me wrong the folks on the front line are for the most part real angels but the system needs a bit of competition I think. I want medicare to still pay but I want to sign off on the service getting the $
So its off to Brisbane at 5 am tomorrow. And with a second, but late, appt at the Nephrologists its going to be a long day.
Thursday, June 16, 2016
Life's good!
Okay I've been remiss but I have an excuse.
Lots of things going on but first to the "weather report".
Things are a little changeable at the moment. Rain on the horizon maybe but it might just blow over.
Less cryptic version. I needed two bags of blood last trip to Brissy. We booked for overnight the time before and I didn't need it. So when we had to check into a hotel to get blood the next day we had no luggage no toothbrush etc. tomorrow I go down again and we are taking a packed bag but hope I don't need it. I feel good in myself and don't think I need it. We'll see
For. Those of you playing along at home you'll remember that my new drug Jacavi (go on google it you know you want to...voyeurs!), is doing its job and I haven't had to worry about itching or night sweats since a few days after starting it. The major Side effect of reducing red cells has caught up with me 4 weeks ago but Doc Shoozenbootzen says that the body sorts that out and I should start to come up over time.
For the techno math folks I was down to 78 before getting two bags of blood and each bag is the equivalent of 10 in red cells so I should have instantly come up to 98 or there abouts and two weeks ago (two weeks after the new blood) I was at 101 so no drop in the two weeks. Which is excellent! I can't believe I have adjusted to the Jacavi that fast so it may just be an aboration.
Come to think of it having a blood cancer is an aboration - end of whine.
So the fact that I feel like I have lots of red is a good sign but I may be delusional.
Many of you will agree!
I'm booked to be a trainee crew member on the South Passage. It's a ship run by a sail training Org to give young people team building experiences. I'm going to volunteer with them and the gave me the opportunity right off the bat to fly up to Cairns and do a one weeks voyage around the islands off Cairns. I have a watch leaders manual that 300 pages of sailing, safety, seamanship etc. I will be a long time before I'm a watch leader but It will be fun in the meantime. Check out my Facebook page for more info and photos from the first day sail I did with them.
More later
Chris
Lots of things going on but first to the "weather report".
Things are a little changeable at the moment. Rain on the horizon maybe but it might just blow over.
Less cryptic version. I needed two bags of blood last trip to Brissy. We booked for overnight the time before and I didn't need it. So when we had to check into a hotel to get blood the next day we had no luggage no toothbrush etc. tomorrow I go down again and we are taking a packed bag but hope I don't need it. I feel good in myself and don't think I need it. We'll see
For. Those of you playing along at home you'll remember that my new drug Jacavi (go on google it you know you want to...voyeurs!), is doing its job and I haven't had to worry about itching or night sweats since a few days after starting it. The major Side effect of reducing red cells has caught up with me 4 weeks ago but Doc Shoozenbootzen says that the body sorts that out and I should start to come up over time.
For the techno math folks I was down to 78 before getting two bags of blood and each bag is the equivalent of 10 in red cells so I should have instantly come up to 98 or there abouts and two weeks ago (two weeks after the new blood) I was at 101 so no drop in the two weeks. Which is excellent! I can't believe I have adjusted to the Jacavi that fast so it may just be an aboration.
Come to think of it having a blood cancer is an aboration - end of whine.
So the fact that I feel like I have lots of red is a good sign but I may be delusional.
Many of you will agree!
I'm booked to be a trainee crew member on the South Passage. It's a ship run by a sail training Org to give young people team building experiences. I'm going to volunteer with them and the gave me the opportunity right off the bat to fly up to Cairns and do a one weeks voyage around the islands off Cairns. I have a watch leaders manual that 300 pages of sailing, safety, seamanship etc. I will be a long time before I'm a watch leader but It will be fun in the meantime. Check out my Facebook page for more info and photos from the first day sail I did with them.
More later
Chris
Tuesday, April 12, 2016
Further to the new drug.
I'm with bluey in Brissy and this time it's for her!
Shes' at a meeting and I'm hanging our in a Uni Coffee shop. It's very weird to be here. I've been out of this environment for 40 years. I've been in the TAFE system and the state school system lots in the last few years but it nice to be at a university. Even though it's nothing more than a bunch of building and a coffee shop, it's the conversations around me that are great.
Anyway I'm here to report that the new drug has made a difference! I don't have to put body lotion on every day, my fingers and toes have stopped itching, And I'm not so hot when I sleep. Now let's see if I need to get transfusions more often (bad side effect).
More later
Chris
Shes' at a meeting and I'm hanging our in a Uni Coffee shop. It's very weird to be here. I've been out of this environment for 40 years. I've been in the TAFE system and the state school system lots in the last few years but it nice to be at a university. Even though it's nothing more than a bunch of building and a coffee shop, it's the conversations around me that are great.
Anyway I'm here to report that the new drug has made a difference! I don't have to put body lotion on every day, my fingers and toes have stopped itching, And I'm not so hot when I sleep. Now let's see if I need to get transfusions more often (bad side effect).
More later
Chris
Thursday, April 7, 2016
I'm so slack! My apologies.
I outright lied to a good friend when I told her I was going to update my blog "that afternoon" this was a few weeks ago so here's my late late news.
It's more of the same but then again it's not.
More of the same waiting and trying new things and waiting and seeing if there is a change or not and then saying " well it's going okay".
Here's the detailed synoptic.
The red count is still down and bit from normal at 112 but up from the occasional low of high nineties. I'm making enough reds to get along just fine thanks.
Whites all good
Neutrifils just wonderful thanks
Platelettes. High but that consistent with not having a spleen any more (see previous spleen discussions if you want to know the myster of the missing spleen)
I'm still getting Intragam (immune booster) on my regular 4 weekly trips to the doc in Brissy.
The biggest new news is that I have started the new drug. Jakavi. It's just out on the market and it's just come onto the PBS system to reduce the cost. Bluey did her usual due diligence on the net to find out about this little beauty and found that it costs 120,000 for a month I pay 35.00.
It is supposed to help me with my "constitutional issues", that is, it won't cure me but it will help with my quality of life issues. They are little things that others won't notice but make me uncomfortable sometimes. Itchy feet, itchy hands, night sweats, occasional joint pain etc. I've only been on it a week and as advertised it has started working already!!!!
I've noticed way less itching already. And there's some thing unexpected.
I generally have a sense that I feel better.
It's nothing I can put a finger on so maybe it's just phychosomatic, but there is a decidely larger amount of energy and I felt like I might have been on steroids again. I've got to ask the doc if there is a mimic of steroids effect involved.
So My kidneys are still half crap and my bone marrow is still half crap but I feel great! No problems.....
Other shoe: the major side effect reported on this new drug is a drop in Red cells. so my next appointment is booked for two days in case I need a transfusion. And if I start getting them on regular basis I will need to think about travel plans an overload of Iron in my blood.
So take one step forward and then balance on your foot and wait and see if you have to take a half step back!
More later Chris
It's more of the same but then again it's not.
More of the same waiting and trying new things and waiting and seeing if there is a change or not and then saying " well it's going okay".
Here's the detailed synoptic.
The red count is still down and bit from normal at 112 but up from the occasional low of high nineties. I'm making enough reds to get along just fine thanks.
Whites all good
Neutrifils just wonderful thanks
Platelettes. High but that consistent with not having a spleen any more (see previous spleen discussions if you want to know the myster of the missing spleen)
I'm still getting Intragam (immune booster) on my regular 4 weekly trips to the doc in Brissy.
The biggest new news is that I have started the new drug. Jakavi. It's just out on the market and it's just come onto the PBS system to reduce the cost. Bluey did her usual due diligence on the net to find out about this little beauty and found that it costs 120,000 for a month I pay 35.00.
It is supposed to help me with my "constitutional issues", that is, it won't cure me but it will help with my quality of life issues. They are little things that others won't notice but make me uncomfortable sometimes. Itchy feet, itchy hands, night sweats, occasional joint pain etc. I've only been on it a week and as advertised it has started working already!!!!
I've noticed way less itching already. And there's some thing unexpected.
I generally have a sense that I feel better.
It's nothing I can put a finger on so maybe it's just phychosomatic, but there is a decidely larger amount of energy and I felt like I might have been on steroids again. I've got to ask the doc if there is a mimic of steroids effect involved.
So My kidneys are still half crap and my bone marrow is still half crap but I feel great! No problems.....
Other shoe: the major side effect reported on this new drug is a drop in Red cells. so my next appointment is booked for two days in case I need a transfusion. And if I start getting them on regular basis I will need to think about travel plans an overload of Iron in my blood.
So take one step forward and then balance on your foot and wait and see if you have to take a half step back!
More later Chris
Friday, January 8, 2016
Rux.......a....something
Okay so we have more information. If you remember I have been initially cleared to get a new drug Rux...a...something. I now have more information about the whole deal.
First it's not a trial it's a program to get the drug on compassionate grounds as its not on the Pharmacutetical benefits scheme (PBS). Bluey thinks my spelling is 'cute'. Anyway I'm in line to get this but Doc Shoozenbootzen is away in Canada skiing so the great Doc that was my registrar during Translant was the sub today and he filled us in but doesn't know if we got approved.
The drug works on one of the later pathways in the progress of my disease. It doesn't cure me but will give immediate relief from lots of symptoms. Unfortunately it does reduce red cell production which is an issue for me. I'm on a drug to boost red cell and I'm holding my own with that drug so may not have to have too many transfusions but it's a possibility. The SUBDoc gave us lots of good inf about my cells and the pathways etc so we feel very well informed now.
I remember tha Doc Shoozenbootzen said the new drug may even help my kidneys as well so that would be a great side benefit.
More later
Chris
First it's not a trial it's a program to get the drug on compassionate grounds as its not on the Pharmacutetical benefits scheme (PBS). Bluey thinks my spelling is 'cute'. Anyway I'm in line to get this but Doc Shoozenbootzen is away in Canada skiing so the great Doc that was my registrar during Translant was the sub today and he filled us in but doesn't know if we got approved.
The drug works on one of the later pathways in the progress of my disease. It doesn't cure me but will give immediate relief from lots of symptoms. Unfortunately it does reduce red cell production which is an issue for me. I'm on a drug to boost red cell and I'm holding my own with that drug so may not have to have too many transfusions but it's a possibility. The SUBDoc gave us lots of good inf about my cells and the pathways etc so we feel very well informed now.
I remember tha Doc Shoozenbootzen said the new drug may even help my kidneys as well so that would be a great side benefit.
More later
Chris
Tuesday, December 22, 2015
Maybe some good news
Actually there is good news and then maybe better news.
The good news is the Aranesp seems to be working as I had a red count of 116 which is only 4 points off normal.
The bone Marrow aspiration went well. I had primed the nurse to be ready to get the dazzle in fast and I'm glad I did because she seemed a bit surprised at how fast Doc Shoozenbootzen moved she had this look on her face as she's scrabbling to get her gloves on and get the singe into the line. I just said "I Told you" and laughed. Felt the needle to deaden the skin but nothing after that and It didn't even hurt when I woke up.
We got the results last Thursday and the Doc says I meet the minimum requirements for the trial. This is of course good cause we go on to apply for the trial now. But it means that I sick enough to meet the terms. Oh well. Not there yet as he has to apply and he has to talk it over with my Kidney Doctor as there are implications to my kidneys using this new drug VUXSOMETHING.
So we are up for a great Christmas season.
More later
Merry Christmas
Chris
The good news is the Aranesp seems to be working as I had a red count of 116 which is only 4 points off normal.
The bone Marrow aspiration went well. I had primed the nurse to be ready to get the dazzle in fast and I'm glad I did because she seemed a bit surprised at how fast Doc Shoozenbootzen moved she had this look on her face as she's scrabbling to get her gloves on and get the singe into the line. I just said "I Told you" and laughed. Felt the needle to deaden the skin but nothing after that and It didn't even hurt when I woke up.
We got the results last Thursday and the Doc says I meet the minimum requirements for the trial. This is of course good cause we go on to apply for the trial now. But it means that I sick enough to meet the terms. Oh well. Not there yet as he has to apply and he has to talk it over with my Kidney Doctor as there are implications to my kidneys using this new drug VUXSOMETHING.
So we are up for a great Christmas season.
More later
Merry Christmas
Chris
Friday, November 13, 2015
okay okay okay heres the update
So just coming home from Brissy. Did the 4 weekly trip for treatment and its all goodish. I'm half crap but stable. I did a pot of pee two weeks ago and the results are in. The protein my kidneys are leakng out has significantly reduced but its still too high, but its plateaued! My reds were at 107 which is good for me but more importantly its not down from last time so that means the Aransp is working at keeping my reds up. So thats all encourageing but to top it off he started telling me about a new drug that normally they would use it on my MyleoFibrosis except when the spleen is out (like me) except when the Myleo fibrosis is prominent (like maybe me)! So, with me so far?
So for those of you playing along at home...guess how we find out if I get to have the new drug...?
Yep im booked for yet another bone marrow aspiration (BMA). Remember how much I love this procedure? Its esentially a 1/4 inch core sample of my hip bone. Two times ago Doc Shoozenbootzen hurt his shoulder because my hip bone is so scarred up! We have since been doing a flip on the bed so he can work on my left hip.
Its all good because of Madasapamine (sedation)(Dazzle)! The Doc and I have a Deal ... He can hurt me as much as he wants, as long I'm not there!
So thats my life, How, you doin?
More later
Chris
So for those of you playing along at home...guess how we find out if I get to have the new drug...?
Yep im booked for yet another bone marrow aspiration (BMA). Remember how much I love this procedure? Its esentially a 1/4 inch core sample of my hip bone. Two times ago Doc Shoozenbootzen hurt his shoulder because my hip bone is so scarred up! We have since been doing a flip on the bed so he can work on my left hip.
Its all good because of Madasapamine (sedation)(Dazzle)! The Doc and I have a Deal ... He can hurt me as much as he wants, as long I'm not there!
So thats my life, How, you doin?
More later
Chris
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