Well I'm back home, so that's a start...
Today was quite a good day and productive from a number of perspectives.
First, Dr. Keary is once again my treating specialist. Although my appointment began with Dr. McCormick, Dr. Keary came in half way through and has resumed my case.
A lot of questions were answered today. It turns out that my increasing weakness is due to Steroid-Induced Myopathy. As I am unable to be taken off the Corticosteroids, I will continue to get weaker with time, so this is now something else we have to deal with.
My last lung function test results were back, and they have shown a slight decrease in function since last time. When we asked about the effects of my continuing to smoke cigarettes on the rate of decline, we were told that the disease will continue to reduce my function at a significantly higher rate than smoking and that quitting would have little to no effect on the eventual outcome. The damage was done in 2007...
Treatment options were also discussed, it being decided that next weeks infusion of Intragam would be my last for a while (no need for a port). I will be ceasing Cyclophosphamide and transferring to Cyclosporin in a few months time and my blood pressure medication has altered in an attempt to remedy the Raynaud's Phenomenon I have been experiencing.
We finally got around to asking both Dr. Keary and Dr. McCormick about a long term prognosis. Both are now adamant that I will never be capable of re-entering the workforce in any capacity. While I am disappointed that my short career with QRNational is soon to be at an end, it is nice to finally get a straight answer on this topic and have some closure. Realistically, I think I had been expecting as much, so it didn't come as much of a shock. When I have my infusion next week, Dr. Keary has asked for me to hand him the necessary paperwork to finalise things in this regard.
That's pretty much all I can think of at the moment. If I have forgotten anything I will be sure to let you know.
Cheers,
Jason.
Thursday, September 24, 2009
A (very) quick update...
Hi all,
Just a short note to let you know what is happening.
I was contacted by Dr. McCormack (my current treating specialist) yesterday to see if I was able to attend a clinic appointment with Dr. Keary (my original specialist from 2007).
I will be heading to Townsville today for this appointment as there are a number of issues I wish to discuss with him, including the possibility of a Port insertion. If this is able to be done in the next few days, the timing will be perfect, as my next infusion is scheduled for next Thursday and this will eliminate the need for me to have the Port attended to individually (they can do it before the infusion).
IF the port does get the go ahead, there is a chance that I will not be leaving the hospital today...
I shall update you as to the outcome as soon as possible.
Cheers,
Jason.
Just a short note to let you know what is happening.
I was contacted by Dr. McCormack (my current treating specialist) yesterday to see if I was able to attend a clinic appointment with Dr. Keary (my original specialist from 2007).
I will be heading to Townsville today for this appointment as there are a number of issues I wish to discuss with him, including the possibility of a Port insertion. If this is able to be done in the next few days, the timing will be perfect, as my next infusion is scheduled for next Thursday and this will eliminate the need for me to have the Port attended to individually (they can do it before the infusion).
IF the port does get the go ahead, there is a chance that I will not be leaving the hospital today...
I shall update you as to the outcome as soon as possible.
Cheers,
Jason.
Monday, September 14, 2009
You Live, You Learn (Or Not)...
It is a common belief that you learn from your mistakes. Sometimes I have to wonder... However, before I tackle that issue, a little update on treatment...
Last Thursday (September 3) saw me up in Townsville for my monthly infusion. I have become accustomed to the feeling of dread that accompanies this. Why dread I hear some of you ask. Well quite simply, infusions are not easy on either myself or the person who has to insert the cannula. My veins have become quite scarred over the last few years thanks to the regular infusions and blood tests I have every few weeks. They are also quite small now thanks to the Prednisilone. (Apparently Corticosteroids cause the veins to shrink). These two combined make what should be a relatively simple procedure somewhat of a major undertaking, consisting of numerous stabbings in an attempt to find a vein which is willing to play the game and lovely purple bruises for a week or so afterwards. Oh how I long for a PICC Line...
Anyway, back to learning (or not) from ones mistakes...
Yesterday we finally got around to removing the old 12000 BTU box Air-conditioning unit from our master bedroom. This had been in the planning for quite some time as the replacement split system was installed early last year. Our neighbour, a painting contractor finally had his tall trestles home for a while so we put them in place and made a start. To cut a long story short, the old unit was finally persuaded out and myself and Patrick (my brother-in-law) carried it down stairs for disposal at a later date. No big deal there, well not yet anyway. One thing I seem to keep forgetting is that the more I do physically, the more waste is produced by the muscles and the more Jo-1 my body makes as a reaction to this... Oops, this is something of which I am quite aware but seem to ignore from time to time... As a result, last night was another one of those no sleeping, all aching, high fever events which Kerry just loves. One would think that one would learn... Apparently not...
I think we may be getting another bed...
Cheers,
Jason
Last Thursday (September 3) saw me up in Townsville for my monthly infusion. I have become accustomed to the feeling of dread that accompanies this. Why dread I hear some of you ask. Well quite simply, infusions are not easy on either myself or the person who has to insert the cannula. My veins have become quite scarred over the last few years thanks to the regular infusions and blood tests I have every few weeks. They are also quite small now thanks to the Prednisilone. (Apparently Corticosteroids cause the veins to shrink). These two combined make what should be a relatively simple procedure somewhat of a major undertaking, consisting of numerous stabbings in an attempt to find a vein which is willing to play the game and lovely purple bruises for a week or so afterwards. Oh how I long for a PICC Line...
Anyway, back to learning (or not) from ones mistakes...
Yesterday we finally got around to removing the old 12000 BTU box Air-conditioning unit from our master bedroom. This had been in the planning for quite some time as the replacement split system was installed early last year. Our neighbour, a painting contractor finally had his tall trestles home for a while so we put them in place and made a start. To cut a long story short, the old unit was finally persuaded out and myself and Patrick (my brother-in-law) carried it down stairs for disposal at a later date. No big deal there, well not yet anyway. One thing I seem to keep forgetting is that the more I do physically, the more waste is produced by the muscles and the more Jo-1 my body makes as a reaction to this... Oops, this is something of which I am quite aware but seem to ignore from time to time... As a result, last night was another one of those no sleeping, all aching, high fever events which Kerry just loves. One would think that one would learn... Apparently not...
I think we may be getting another bed...
Cheers,
Jason
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