Ethan Hawke plays the part of the rookie cop who gets partnered up with the veteran and highly corrupt cop played by Denzel Washington and........ Hang on a minute. That is the wrong training day. Mine has far less guns and is not nearly as violent. In fact the most violent thing that happened was when I was tapped on the knee by that rubber thingy (yes, I believe that is the technical name;)) when they tested my reflexes.
So on a cold sunday morning I caught a cab to St Vincent's hospital where I was greeted with a warm cup of tea before being shown to an examination room where I would be poked and prodded by a bunch of medical students. I always seem to be a little off the mark when giving my opinion of the students. I guess I never quite know what the examiners are looking for but I recon two out of three did a fairly good job. The third one knew his neurology, but fell short by having a poor understanding of his anatomy which made correct diagnosis almost impossible.
One thing I find really weird about the process is you are not allowed to converse with the students. They are allowed to give instruction and ask simple questions that barely require no more than a yes no answer, but that is it.
In a way I think it is a little unfair. For example, my craniotomy scar. In a clinical setting the doctor would simply ask "why do you have a craniotomy scar?" But they have to guess and it just adds an element that can mislead them. Unfairly in my opinion. Seeing as I am still suffering from chemo baldness the most common conclusion was that I had a tumour surgically removed. It just does not seem accurate. Just ask me. You'll have your answer in less than 30 seconds and they can move on to diagnosing the problem at hand.
But, I'm glad I did it and if asked I will do it again. It makes me feel good to give a little back to medicine from who I owe so much. Even with my whinges and complaints about the health care system they have done a great job looking after me over the years. To all the med students I saw I wish you all good luck in your upcoming exams. If I fronted up at emergency tomorrow I wouldn't mind being treated by any of you. And to all my readers, until next time, stay well:)
Tuesday, May 29, 2012
Saturday, May 26, 2012
Week 6
Labs were fine from last week and I didn't have to have them done this week which is always good news. The diarrhoea I was having last weekend has cleared up but seems to never be far away as all my movements seem to be softer than normal.
I went and saw Professor Miles Prince this week and he seemed to be relatively happy with my progress. It is interesting that there are differences in the post transplant care between what the people in Chicago want me to do and what the doctors at Cabrini use. Personally, I went through the procedure in Chicago so I feel more comfortable following their protocol than the Cabrini protocol. I got the feeling that Miles would prefer to follow the protocol from Cabrini, but he said he was happy to follow their instructions.
There has been no real improvement of note this week although as with every week so far I do feel the slow recovery from the chemotherapy. Unfortunately I did manage to somehow contract a cold which had to be pretty amazing since I've hardly seen anyone. I think I caught it off my daughter who has had a mild sniffle.
Normally if I catch a cold it doesn't effect me that much but with all I've been through and a weakened immune system, this one has knocked me for six. I feel like someone has pumped slime into my head to the point it is about to explode. My nose keeps running, my eyes keep watering and my ears feel blocked. This is coupled with a headache, lethargy and a nasty cough. I talked to Miles Prince about it and he said to just get some rest and drink lots of fluids and call him if it gets worse or I start running a temperature.
Well, I think that's it from me for now. I will update you all again next week and hopefully have other interesting or humorous titbits to share in the mean time. Until then, stay well:)
I went and saw Professor Miles Prince this week and he seemed to be relatively happy with my progress. It is interesting that there are differences in the post transplant care between what the people in Chicago want me to do and what the doctors at Cabrini use. Personally, I went through the procedure in Chicago so I feel more comfortable following their protocol than the Cabrini protocol. I got the feeling that Miles would prefer to follow the protocol from Cabrini, but he said he was happy to follow their instructions.
There has been no real improvement of note this week although as with every week so far I do feel the slow recovery from the chemotherapy. Unfortunately I did manage to somehow contract a cold which had to be pretty amazing since I've hardly seen anyone. I think I caught it off my daughter who has had a mild sniffle.
Normally if I catch a cold it doesn't effect me that much but with all I've been through and a weakened immune system, this one has knocked me for six. I feel like someone has pumped slime into my head to the point it is about to explode. My nose keeps running, my eyes keep watering and my ears feel blocked. This is coupled with a headache, lethargy and a nasty cough. I talked to Miles Prince about it and he said to just get some rest and drink lots of fluids and call him if it gets worse or I start running a temperature.
Well, I think that's it from me for now. I will update you all again next week and hopefully have other interesting or humorous titbits to share in the mean time. Until then, stay well:)
Tuesday, May 22, 2012
Too funny
A friend of mine from the UK posted this on Facebook. It was too funny I had to share it. Maybe the pencil pushing, humourless bureaucrats at the NHS need to find a 30 something male with a juvenile disposition to proof read their signage. I thin I might know someone. Stay well:)
Sunday, May 20, 2012
Week 5
At the moment it is a little bit like two steps forward, one step back. On the whole I am getting better. How I feel now and how I felt three weeks ago when I arrived back in Australia are worlds apart.
I am still feeling quite tired from time to time. I find that if I do something that involves being active I get quite tired but there is no rhyme or reason to it. For example, the other day I went and had my blood test done and went out for coffee with my great uncle and I was pretty good afterwards. But then yesterday my daughter wanted to show me something in her room so I went upstairs to have a look and after fifteen minutes I was exhausted.
On the whole there is continuous improvement. The diarrhoea that I experienced last week slowly eased off. The C diff test came back negative so what was causing it was a bit of a mystery. It was probably the antibiotics but then the one step back. This afternoon it returned, and with it the feelings of lethargy so I have been a real couch potato. I was also supposed to go to the in laws for dinner, but with a movement around every half an hour it is probably not a good idea.
Unfortunately I have not got my blood test results back from this week. As my specialist is organising them and not my GP I am using a different lab and I cannot get the results until they have been reviewed by a doctor. It is kind of annoying as I need to send them to Chicago. On the bright side I do not have to have my blood done every week now. It is now fortnightly so I get a week off.
On another note I had my first shave since the middle of March yesterday. It had to happen sooner or later and is a sign my hair is growing back. But it isn't growing back completely. The hairs on my beard used to be dark brown, they are now blond and only really growing on my chin and under my nose. Growth has not recommenced on my cheeks or neck.
Well, I think that's it for me today. I'll give you another update next week. Until then, stay well:)
I am still feeling quite tired from time to time. I find that if I do something that involves being active I get quite tired but there is no rhyme or reason to it. For example, the other day I went and had my blood test done and went out for coffee with my great uncle and I was pretty good afterwards. But then yesterday my daughter wanted to show me something in her room so I went upstairs to have a look and after fifteen minutes I was exhausted.
On the whole there is continuous improvement. The diarrhoea that I experienced last week slowly eased off. The C diff test came back negative so what was causing it was a bit of a mystery. It was probably the antibiotics but then the one step back. This afternoon it returned, and with it the feelings of lethargy so I have been a real couch potato. I was also supposed to go to the in laws for dinner, but with a movement around every half an hour it is probably not a good idea.
Unfortunately I have not got my blood test results back from this week. As my specialist is organising them and not my GP I am using a different lab and I cannot get the results until they have been reviewed by a doctor. It is kind of annoying as I need to send them to Chicago. On the bright side I do not have to have my blood done every week now. It is now fortnightly so I get a week off.
On another note I had my first shave since the middle of March yesterday. It had to happen sooner or later and is a sign my hair is growing back. But it isn't growing back completely. The hairs on my beard used to be dark brown, they are now blond and only really growing on my chin and under my nose. Growth has not recommenced on my cheeks or neck.
Well, I think that's it for me today. I'll give you another update next week. Until then, stay well:)
Friday, May 18, 2012
This is scarily cool!
What they can do with the brain is amazing. I'm living proof of that with my deep brain implants, but this is even more amazing. I saw this on the Dr Wes blog and had to share it. Stay well:)
Tuesday, May 15, 2012
Is it working?
What a massive question. It has now been a month since my transplant so I have been asking whether or not I have seen any improvement. And my answer..... I'm not sure. I will elaborate further in a minute, but first I want to answer a different question. That question is if I didn't work am I still glad I did it?
The answer to that is much more simple. Unequivocally, yes. Why? Well for a couple of reasons. It is not in my nature to stop trying to find a treatment that will make me better. I couldn't leave such a promising treatment alone. I had to try. Second, I could have waited ten years to have the procedure when hopefully it would become a mainstream treatment. If I had done it then and it worked I would probably feel bitter about the ten years I had lost to the disease. Also, knowing that there was a treatment that could work that I hadn't tried would eat at me. At least if I tried and it didn't work I would know and I can move on.
Now back to question one. Why am I not sure it has worked yet. There is evidence that I have seen slight improvement, but I guess the lawyers would call it circumstantial. So what evidence do I have?
First, the sore arms I had nearly every night have all but disappeared. If anything I just get a small tingling in my fingers but it does not wake me or hurt.
Second, I may have a slight increase in movement when I do some exercises. When I try to stand on my toes I have a slight bit more elevation than I used to and if I try to jump I can actually feel a bit of space between my feet and the ground. However, I have recently lost eight kilos so the difference in weight could be what is allowing me to achieve this.
Third, a couple of my friends have said that my voice sounds better. And by better I mean clearer and steadier. I also have slightly improved bladder control. Now, let me clarify, I wasn't going around wetting myself but I was finding that when I felt the urge I had to go quite quickly. I have found that recently I have been able to hang on longer and retain more fluid too. I was never sure if this was a CIDP thing or a drawback from all the kidney surgery I have had. Honestly I think it is a little bit of both.
So, why am I still not sure? The results if real are incremental at best and if I think about it rationally I have to question the validity of the results. It is all subjective data and emotionally I really want it to work. I really, really want it to work and my rational mind must ask whether this compromises my objectivity? Damn my rational mind! It would be so much nicer to live in ignorant bliss and convince myself it was working.
Anyway, I have made a solid mental note of where my capabilities lie so when I retest myself I will have something solid to compare to. But before we crack the champagne I think it best to wait for some more definitive proof. I'll keep you posted. Until then stay well:)
The answer to that is much more simple. Unequivocally, yes. Why? Well for a couple of reasons. It is not in my nature to stop trying to find a treatment that will make me better. I couldn't leave such a promising treatment alone. I had to try. Second, I could have waited ten years to have the procedure when hopefully it would become a mainstream treatment. If I had done it then and it worked I would probably feel bitter about the ten years I had lost to the disease. Also, knowing that there was a treatment that could work that I hadn't tried would eat at me. At least if I tried and it didn't work I would know and I can move on.
Now back to question one. Why am I not sure it has worked yet. There is evidence that I have seen slight improvement, but I guess the lawyers would call it circumstantial. So what evidence do I have?
First, the sore arms I had nearly every night have all but disappeared. If anything I just get a small tingling in my fingers but it does not wake me or hurt.
Second, I may have a slight increase in movement when I do some exercises. When I try to stand on my toes I have a slight bit more elevation than I used to and if I try to jump I can actually feel a bit of space between my feet and the ground. However, I have recently lost eight kilos so the difference in weight could be what is allowing me to achieve this.
Third, a couple of my friends have said that my voice sounds better. And by better I mean clearer and steadier. I also have slightly improved bladder control. Now, let me clarify, I wasn't going around wetting myself but I was finding that when I felt the urge I had to go quite quickly. I have found that recently I have been able to hang on longer and retain more fluid too. I was never sure if this was a CIDP thing or a drawback from all the kidney surgery I have had. Honestly I think it is a little bit of both.
So, why am I still not sure? The results if real are incremental at best and if I think about it rationally I have to question the validity of the results. It is all subjective data and emotionally I really want it to work. I really, really want it to work and my rational mind must ask whether this compromises my objectivity? Damn my rational mind! It would be so much nicer to live in ignorant bliss and convince myself it was working.
Anyway, I have made a solid mental note of where my capabilities lie so when I retest myself I will have something solid to compare to. But before we crack the champagne I think it best to wait for some more definitive proof. I'll keep you posted. Until then stay well:)
Saturday, May 12, 2012
Week 4
Improvement has continued which is great. The fatigue and tiredness seem to be a little less, but if I have a burst of activity I will normally have to have a rest in order to recuperate. Another good thing is the UTI I had has cleared up but might have left a nasty side effect. The antibiotics that they gave me for the UTI also clean out the good bacteria in your intestines which allow the bad bacteria to proliferate.
As a result I have been having lots of diarrhoea. I have raised this with the good people in Chicago and also my doctors here and they agree that I should have a test for clostridium difficile (C-diff) the bacteria that normally grows in the absence of good bacteria. I should get the results on Monday. The irony is that in order to treat c-diff which was caused by antibiotics, the treatment is, yes, you guessed it, more antibiotics. But I hope it is diagnosed quickly as I am getting tired of the diarrhoea all the time.
The other question I have been asking myself a lot is has the procedure worked? Well, it is a difficult question to answer so I will make it the subject of my next post. Until then, stay well:)
As a result I have been having lots of diarrhoea. I have raised this with the good people in Chicago and also my doctors here and they agree that I should have a test for clostridium difficile (C-diff) the bacteria that normally grows in the absence of good bacteria. I should get the results on Monday. The irony is that in order to treat c-diff which was caused by antibiotics, the treatment is, yes, you guessed it, more antibiotics. But I hope it is diagnosed quickly as I am getting tired of the diarrhoea all the time.
The other question I have been asking myself a lot is has the procedure worked? Well, it is a difficult question to answer so I will make it the subject of my next post. Until then, stay well:)
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