I'm not sure what I have told folks about re my health.
I'm travelling and have been all over.
So first thing first my Myleo Fibrosis is pretty much the same and the new medication is doing some of which its should be doing but...
It's stopping the itch/tingling in my hands and feet. it would be reducing the size of my spleen, If I had one so that's not a benefit. We had hoped that it might help my kidneys but not so much joy there. In fact two meeting ago the kidney doc was included in a conference call and concluded that my kidneys were what they were and we just had to watch the levels in anticipation of dialysis at some point down the road. The phrase 'end stage management' was used but that's the end of my kidneys not the end of me. Doc Shozenbootzen was holding out a tiny bit of hope for the new drug but did say that there was no clinical expectation and that if it did work then 'we would be writing it up for the medical Journals'.
But
There's always a but
The new drug has lowered my Hb or red cell count. I've had about 8 bags of blood in the past four months and the other drug I take to raise my Hb has been doubled. So we need to take a long look at the good and the bad of the new drug and make a call when we get back from hols ....I may stop the new drug and control the itch with moisturising as I did before and enjoy better blood results
Bluey is a bit sad that we have lost hope to repair my kidneys but I'm just looking at the half full side and that is I'm at 50% useful kidneys and dialysis starts at 5% so .... good for a while.!
It doen't help that I went sailing on a tall ship and had a guy land on my ankle and broke it. I also caught a bad chest infection that is sticking with me a bit as is the cast on my ankle. Makes it hard to travel but it's coming off in Calgary I think.
So bluey and the neighbors are out in the rental pool right now and I'm sitting in the dark(feels cooler) typing this up. We are in a share house with the bridal couple, parents of both, relatives, the Murder House Bridesmaids, cousins arriving still... it's about 25 people but there is never a Moment when they are all stopped so who knows really.
What?
Oh the Murder House Bridesmaids that's
A great story. Make a comment and ask me about it.
More later
Chris
Saturday, August 6, 2016
Saturday, June 18, 2016
A Big Day.
Well it was a big day in the chair yesterday. A Big Day.
Got in early at 9:00am so we we up at 4 on the road at 5:00am to get to Brissy in time. It was really weird as there was pretty light traffic despite being the later end of rush hour as we got to Briasy. We got a newbie and she had a bit of a fumble on the access so we had another great nurse make the jab. Took blood and started the Intragamm. turns out that the super Nurse Practise Mgr from yesterday figured out how to get the operetta testing company to fix up their error and my crossmatched blood was waiting for me. Win! That will speed things up......or not. for some reason the access was slow and I was in the chair from 9am till 430 pm and then time to see the doc so didn't get out till after 5:00pm.
Obviously missed my 4:10 appt with the kidney doc but we called him from Doc Shoozenbootzen's office so had a inference call. We all decided that the various treatments to my kidneys, Pontecellie, Myfortic etc., has not worked.
The phrase "move into end management" was used.
Although this sounds daunting those of you that have been playing along at home will know that this relates to the end of my kidneys not the end of me. As a reminder (to me as well as to you) the kidneys are at 50% and dialysis doesn't start until my kidneys get down to 5% so that a ways off. Also previously we've been told that I can do dialysis way into my old age, which is good because I've also previously been told by the time my kidney do pack it in I'll be to old to get a transplant.
Pause for self pity. ...... Okay now that bullshit is over.... so get on with it.
First off no one knows how long I'll go before my kidneys get worse. It's a very slow thing right now. Second I heard on the radio about a treatment that was given 24 months to take effect and they had NO sign of success until 22 months in. I take this to mean in my situation that there is still a bit of time for the new drug Jacavi to maybe help although it's a fibrosis drug not a kidney drug.
And hey I'm going for a week long sail trip starting in a week. Joyce is retiring in a month. We are traveling to NorAM later and then Bali. I'll still be able to travel in Aus later so it's all good.
More later
Chris
Got in early at 9:00am so we we up at 4 on the road at 5:00am to get to Brissy in time. It was really weird as there was pretty light traffic despite being the later end of rush hour as we got to Briasy. We got a newbie and she had a bit of a fumble on the access so we had another great nurse make the jab. Took blood and started the Intragamm. turns out that the super Nurse Practise Mgr from yesterday figured out how to get the operetta testing company to fix up their error and my crossmatched blood was waiting for me. Win! That will speed things up......or not. for some reason the access was slow and I was in the chair from 9am till 430 pm and then time to see the doc so didn't get out till after 5:00pm.
Obviously missed my 4:10 appt with the kidney doc but we called him from Doc Shoozenbootzen's office so had a inference call. We all decided that the various treatments to my kidneys, Pontecellie, Myfortic etc., has not worked.
The phrase "move into end management" was used.
Although this sounds daunting those of you that have been playing along at home will know that this relates to the end of my kidneys not the end of me. As a reminder (to me as well as to you) the kidneys are at 50% and dialysis doesn't start until my kidneys get down to 5% so that a ways off. Also previously we've been told that I can do dialysis way into my old age, which is good because I've also previously been told by the time my kidney do pack it in I'll be to old to get a transplant.
Pause for self pity. ...... Okay now that bullshit is over.... so get on with it.
First off no one knows how long I'll go before my kidneys get worse. It's a very slow thing right now. Second I heard on the radio about a treatment that was given 24 months to take effect and they had NO sign of success until 22 months in. I take this to mean in my situation that there is still a bit of time for the new drug Jacavi to maybe help although it's a fibrosis drug not a kidney drug.
And hey I'm going for a week long sail trip starting in a week. Joyce is retiring in a month. We are traveling to NorAM later and then Bali. I'll still be able to travel in Aus later so it's all good.
More later
Chris
Thursday, June 16, 2016
Update from this afternoon
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.
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.
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
Subscribe to:
Posts (Atom)