...that given I now have the Blogger application on my Tablet that I would be posting more frequently right? Apparently not, or maybe. Given the lengths of time that have elapsed between posts in the past, these last few have been coming thick and fast.
Anyway...
Two weeks ago I had an appointment with Peter to check on the progress of my Whooping Cough and assess whether I could commence my next course of Rituximab. The Whooping Cough is progressing as it should, unfortunately it's not going to go away overnight, the Rituximab on the other hand is not going to happen.
My ESR and CRP levels remain quite elevated, leading to Peter concluding that the Rituximab has had very little impact on the disease itself. I'm pretty sure this has not been helped by the fact that I have not had Cyclosporin for nearly two months. At any rate, since it is the only thing that appears to have worked in the past, I will be recommencing 6 weekly infusions of Infliximab starting this coming week. We're really not sure what is going to happen fro here. The last few times I have been given Infliximab, I have had a rather nasty reaction to it. The plan this time is to pre-load me with large doses of an Anti-Histamine and Methyl-Prednisolone in an attempt to prevent any negative reactions. Here's hoping, as I also believe Infliximab is one of the few things that has made my quality of life as high as it has been. That plus Peter keeps telling me that if it weren't for the Infliximab, I would be dead today. Geez doc, way to keep reminding a guy...
I have not long returned from Bowen, having visited my mother for her birthday. She was quite happy to see us, even minus Madison, who was away at a sleep-over birthday party for one of her friends. Today was mum's first birthday in a nursing home, and while she seems to be settling in okay now, I think it helped her to feel better being surrounded by family for a few hours.
Travelling seems to be taking more and more of a toll on me as time goes by. I guess the body is starting to break down at an alarming rate now, and thanks to the ever increasing doses of pain killers I am being prescribed in an attempt to make life more comfortable, the brain is starting to follow suit. It's not that I feel any less like myself, more of a case of not being to concentrate on anything for any length of time, constantly forgetting what I was going to do when I get somewhere, and not having much patience for anything any more. Before anyone starts to worry though, I should reassure you that I have taken it upon myself to drive as little as humanly possible.
Well, it's time for me to start settling down to my night time routine, so as always, I will keep you posted as things occur.
Cheers,
Jason.
Sunday, August 14, 2011
One would think...
...that given I now have the Blogger application on my Tablet that I would be posting more frequently right? Apparently not, or maybe. Given the lengths of time that have elapsed between posts in the past, these last few have been coming thick and fast.
Anyway...
Two weeks ago I had an appointment with Peter to check on the progress of my Whooping Cough and assess whether I could commence my next course of Rituximab. The Whooping Cough is progressing as it should, unfortunately it's not going to go away overnight, the Rituximab on the other hand is not going to happen.
My ESR and CRP levels remain quite elevated, leading to Peter concluding that the Rituximab has had very little impact on the disease itself. I'm pretty sure this has not been helped by the fact that I have not had Cyclosporin for nearly two months. At any rate, since it is the only thing that appears to have worked in the past, I will be recommencing 6 weekly infusions of Infliximab starting this coming week. We're really not sure what is going to happen fro here. The last few times I have been given Infliximab, I have had a rather nasty reaction to it. The plan this time is to pre-load me with large doses of an Anti-Histamine and Methyl-Prednisolone in an attempt to prevent any negative reactions. Here's hoping, as I also believe Infliximab is one of the few things that has made my quality of life as high as it has been. That plus Peter keeps telling me that if it weren't for the Infliximab, I would be dead today. Geez doc, way to keep reminding a guy...
I have not long returned from Bowen, having visited my mother for her birthday. She was quite happy to see us, even minus Madison, who was away at a sleep-over birthday party for one of her friends. Today was mum's first birthday in a nursing home, and while she seems to be settling in okay now, I think it helped her to feel better being surrounded by family for a few hours.
Travelling seems to be taking more and more of a toll on me as time goes by. I guess the body is starting to break down at an alarming rate now, and thanks to the ever increasing doses of pain killers I am being prescribed in an attempt to make life more comfortable, the brain is starting to follow suit. It's not that I feel any less like myself, more of a case of not being to concentrate on anything for any length of time, constantly forgetting what I was going to do when I get somewhere, and not having much patience for anything any more. Before anyone starts to worry though, I should reassure you that I have taken it upon myself to drive as little as humanly possible.
Well, it's time for me to start settling down to my night time routine, so as always, I will keep you posted as things occur.
Cheers,
Jason.
Anyway...
Two weeks ago I had an appointment with Peter to check on the progress of my Whooping Cough and assess whether I could commence my next course of Rituximab. The Whooping Cough is progressing as it should, unfortunately it's not going to go away overnight, the Rituximab on the other hand is not going to happen.
My ESR and CRP levels remain quite elevated, leading to Peter concluding that the Rituximab has had very little impact on the disease itself. I'm pretty sure this has not been helped by the fact that I have not had Cyclosporin for nearly two months. At any rate, since it is the only thing that appears to have worked in the past, I will be recommencing 6 weekly infusions of Infliximab starting this coming week. We're really not sure what is going to happen fro here. The last few times I have been given Infliximab, I have had a rather nasty reaction to it. The plan this time is to pre-load me with large doses of an Anti-Histamine and Methyl-Prednisolone in an attempt to prevent any negative reactions. Here's hoping, as I also believe Infliximab is one of the few things that has made my quality of life as high as it has been. That plus Peter keeps telling me that if it weren't for the Infliximab, I would be dead today. Geez doc, way to keep reminding a guy...
I have not long returned from Bowen, having visited my mother for her birthday. She was quite happy to see us, even minus Madison, who was away at a sleep-over birthday party for one of her friends. Today was mum's first birthday in a nursing home, and while she seems to be settling in okay now, I think it helped her to feel better being surrounded by family for a few hours.
Travelling seems to be taking more and more of a toll on me as time goes by. I guess the body is starting to break down at an alarming rate now, and thanks to the ever increasing doses of pain killers I am being prescribed in an attempt to make life more comfortable, the brain is starting to follow suit. It's not that I feel any less like myself, more of a case of not being to concentrate on anything for any length of time, constantly forgetting what I was going to do when I get somewhere, and not having much patience for anything any more. Before anyone starts to worry though, I should reassure you that I have taken it upon myself to drive as little as humanly possible.
Well, it's time for me to start settling down to my night time routine, so as always, I will keep you posted as things occur.
Cheers,
Jason.
Monday, July 25, 2011
Tap. Tap. Tap...
...is this thing on?
Wow... Two posts within an hour huh? What is the occasion I hear you ask.
Well, after my last post I decided to poke about in the Android app store and guess what? It turns out there IS an official Android app for Blogger. I'm using it right now...
Does this mean I'll be posting more often? Don't know, maybe. Depends on how this goes and how it looks when its published. Oh, and if I can stop being so slack...
Right...
...well, that's it.
I've decided that there are going to be no more 'I will post more often' or 'I will post when' comments in my blogs. I always start out with great intentions meaning to do more frequent updates, but things always seem to get in the way.
Procrastination is a thing right?
So, what's happened since I posted in, when was it again? MARCH!!! Poo, I have been slack...
Umm, well, I've since had two more stays in hospital, one for increasing myopathy in the quadraceps and one a few weeks ago for whooping cough. I've also been in for a day for a muscle biopsy of the quads. I'm not entirely sure why they took so long to do one, or why they decided to do one now (other than to annoy me by putting me on crtutches for four weeks) but it pretty much told them exactly what they already knew. I HAVE ANTISYNTHETASE SYNDROME. Right, now that we've got that sorted, can we move on? Please.
Apparently not. Last month the genius who is taking over my case now that Peter Keary (my usual specialist) has gone half time in preparation for retirement, decided that perhaps my immunosuppression was causing the increasing myopathy and has withdrawn it. He has also decreased my Prednisolone to 7.5mg a day. The result? Well, I'm getting worse. The heliotrope rash on my neck and chest has become a bright red (sort of like sunburn), my skin has lost elasticity and hardened significantly. lung function is decreasing and I have developed other rashes on my stomache and arms. On the upside, I am due for a review next week by Peter, as it has been six months since my Rituximab infusion and I am due for another round. Hopefully, he'll take this oportunity to fix up the rest of the meds as well. I'm starting to get really tired of not going on while steadily getting worse.
As some of you will have noticed, I have subscribed to a service which will now post this blog to Facebook. If you care to, you can pop over to my wall and you should be able to find a way to subscribe to the feed there. For those of you who aren't my friends on Facebook, I think you should be able to search for it by name and find it that way. I figure this is going to be an easier way to let everyone know when a new post is added, instead of the old way of me having to let people know via other means. Of course, those of you without Facebook, or who don't subscribe, will be told the way you always have.
Hmm, I should look whether Google has an app to allow me to post that way too.
Cheers,
Jason.
I've decided that there are going to be no more 'I will post more often' or 'I will post when' comments in my blogs. I always start out with great intentions meaning to do more frequent updates, but things always seem to get in the way.
Procrastination is a thing right?
So, what's happened since I posted in, when was it again? MARCH!!! Poo, I have been slack...
Umm, well, I've since had two more stays in hospital, one for increasing myopathy in the quadraceps and one a few weeks ago for whooping cough. I've also been in for a day for a muscle biopsy of the quads. I'm not entirely sure why they took so long to do one, or why they decided to do one now (other than to annoy me by putting me on crtutches for four weeks) but it pretty much told them exactly what they already knew. I HAVE ANTISYNTHETASE SYNDROME. Right, now that we've got that sorted, can we move on? Please.
Apparently not. Last month the genius who is taking over my case now that Peter Keary (my usual specialist) has gone half time in preparation for retirement, decided that perhaps my immunosuppression was causing the increasing myopathy and has withdrawn it. He has also decreased my Prednisolone to 7.5mg a day. The result? Well, I'm getting worse. The heliotrope rash on my neck and chest has become a bright red (sort of like sunburn), my skin has lost elasticity and hardened significantly. lung function is decreasing and I have developed other rashes on my stomache and arms. On the upside, I am due for a review next week by Peter, as it has been six months since my Rituximab infusion and I am due for another round. Hopefully, he'll take this oportunity to fix up the rest of the meds as well. I'm starting to get really tired of not going on while steadily getting worse.
As some of you will have noticed, I have subscribed to a service which will now post this blog to Facebook. If you care to, you can pop over to my wall and you should be able to find a way to subscribe to the feed there. For those of you who aren't my friends on Facebook, I think you should be able to search for it by name and find it that way. I figure this is going to be an easier way to let everyone know when a new post is added, instead of the old way of me having to let people know via other means. Of course, those of you without Facebook, or who don't subscribe, will be told the way you always have.
Hmm, I should look whether Google has an app to allow me to post that way too.
Cheers,
Jason.
Thursday, March 10, 2011
I can explain...
... why it's been so long between updates; really, I can.
Basically I had decided to wait until after the holiday period to post anything and let you all know what we had done. I than decided that I would wait until after my Rituximab infusions and let you know how that went. That then evolved into after the clinic appointment, which would give an indication of how effective the infusions had been, which happened today! Phew...
The holiday period was a bit of a non event really. Not much happened, we went on a few little trips catching up with relatives but other than that it really was home based. My best friend of 25 years, James, came to spend a week with us, and sorry to say that with my condition deteriorating steadily; I was kind of glad to see him return home so that I could settle back into my normal routine. That was also the last time I really got stuck into the beer...
Speaking of beer, I have been more or less alcohol free for three months now. I say more or less, as I had half a glass of champagne with Kerry to celebrate our Anniversary / Valentines Day, and two Mid Strength beers at James 40th birthday party.
Now on to the medical stuff, which I suppose is what this blog is supposed to be all about. Those of you who are my 'Facebook Friends' will no doubt have seen little snippets here and there, but nothing really substantial and most certainly nothing really relating to treatment etc.
Starting late January, I commenced a course of Rituximab infusions. This was one infusion per week for four weeks. Well, it was supposed to be anyway; the actual therapy stretched out over 5 weeks thanks to Cyclone Yasi hitting on the last week of the schedule. Not to worry, I suppose though as the course is now finished and the results are in. Unfortunately the Rituximab seems to have had little therapeutic benefit, leaving the specialists with little to nowhere left to go as far as slowing the progression any further. I was again reminded of the average life expectancy of someone with my condition and related complications, which I already knew and really didn't need to hear again. It's probably a good thing Kerry stayed in the waiting room as she would have had one of two reactions to this; she would have either turned into a sobbing mess or she would have gotten angry and abused the doctor, neither of which would have been productive. For my part, I just sat there and told him that this was all information that I already knew. He DID say though that new things are being developed all the time and that we never know what may happen in the next two years, so I suppose he was trying to be positive in some way. Whilst we haven't resigned ourselves to the inevitable just yet, we have now reached a period of acceptance and are fully prepared for the worst.
Drug wise nothing much has changed. I am still receiving pain management therapy using Oxycodone, however as well as taking instant release tablets, I am also on sustained release tablets twice daily. This has been the case since I started the Rituximab infusions and is the main reason why I decided to stop drinking.
Kerry and the girls are doing well. Madison is in Grade 7 this year and is a Peer Mediator. Off to Secondary School for her next year; we have enrolled her in the private school and hope she is accepted. Charlotte has commenced guitar lessons and seems to be progressing well so far. Perhaps in a few years Madison and Charlotte can perform together; Madison on the Piano with Charlotte accompanying her. :-).
Well, it's time for me to get tea on (and the girls want the PC to play 'Club Penguin' so I shall sign off for now and keep you all posted as things arise.
Cheers,
Jason.
Basically I had decided to wait until after the holiday period to post anything and let you all know what we had done. I than decided that I would wait until after my Rituximab infusions and let you know how that went. That then evolved into after the clinic appointment, which would give an indication of how effective the infusions had been, which happened today! Phew...
The holiday period was a bit of a non event really. Not much happened, we went on a few little trips catching up with relatives but other than that it really was home based. My best friend of 25 years, James, came to spend a week with us, and sorry to say that with my condition deteriorating steadily; I was kind of glad to see him return home so that I could settle back into my normal routine. That was also the last time I really got stuck into the beer...
Speaking of beer, I have been more or less alcohol free for three months now. I say more or less, as I had half a glass of champagne with Kerry to celebrate our Anniversary / Valentines Day, and two Mid Strength beers at James 40th birthday party.
Now on to the medical stuff, which I suppose is what this blog is supposed to be all about. Those of you who are my 'Facebook Friends' will no doubt have seen little snippets here and there, but nothing really substantial and most certainly nothing really relating to treatment etc.
Starting late January, I commenced a course of Rituximab infusions. This was one infusion per week for four weeks. Well, it was supposed to be anyway; the actual therapy stretched out over 5 weeks thanks to Cyclone Yasi hitting on the last week of the schedule. Not to worry, I suppose though as the course is now finished and the results are in. Unfortunately the Rituximab seems to have had little therapeutic benefit, leaving the specialists with little to nowhere left to go as far as slowing the progression any further. I was again reminded of the average life expectancy of someone with my condition and related complications, which I already knew and really didn't need to hear again. It's probably a good thing Kerry stayed in the waiting room as she would have had one of two reactions to this; she would have either turned into a sobbing mess or she would have gotten angry and abused the doctor, neither of which would have been productive. For my part, I just sat there and told him that this was all information that I already knew. He DID say though that new things are being developed all the time and that we never know what may happen in the next two years, so I suppose he was trying to be positive in some way. Whilst we haven't resigned ourselves to the inevitable just yet, we have now reached a period of acceptance and are fully prepared for the worst.
Drug wise nothing much has changed. I am still receiving pain management therapy using Oxycodone, however as well as taking instant release tablets, I am also on sustained release tablets twice daily. This has been the case since I started the Rituximab infusions and is the main reason why I decided to stop drinking.
Kerry and the girls are doing well. Madison is in Grade 7 this year and is a Peer Mediator. Off to Secondary School for her next year; we have enrolled her in the private school and hope she is accepted. Charlotte has commenced guitar lessons and seems to be progressing well so far. Perhaps in a few years Madison and Charlotte can perform together; Madison on the Piano with Charlotte accompanying her. :-).
Well, it's time for me to get tea on (and the girls want the PC to play 'Club Penguin' so I shall sign off for now and keep you all posted as things arise.
Cheers,
Jason.
Subscribe to:
Posts (Atom)