Dr Burt is one of the best doctor I have ever had the pleasure of consulting with. After all, he is the doctor responsible for my HSCT which has quite simply changed my life. However, even after all the good work he has done there are still naysayers out there that are very sceptical of the process. They should watch this video as it identifies the benefits of HSCT and answers most of the questions that the critics raise. This is not me saying it. This is one of the most qualified and forward thinking doctors in this field with an outstanding reputation to boot. Hopefully getting this message out will allow the treatment to become much more available to more people and make a huge difference in the lives of many.
Enjoy and stay well:)
http://www.youtube.com/watch?v=5SmLUYomArI
http://www.youtube.com/watch?v=rOlk_-5QcDI
Monday, May 27, 2013
Wednesday, May 22, 2013
Chad Pfefer
What can I say. I can relate to Chads story perfectly. Every point he makes he articulates perfectly and I agree with all of them especially the one he makes about which doctor treats which disease. Watch the videos to find out what he said. Stay well:)
Here is Chad's speech
Part 1
Part 2
Part 3
Tuesday, May 21, 2013
Am I cured?
It is the four letter "c" word that send shivers down the spine of any doctor or health care professional. Using it inappropriately can spell disaster for anyone in the medical field with your low breed ambulance chasing lawyers looking to file suit on whoever dares even mutter the word. Yes, I am talking about cure.
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
Tuesday, May 14, 2013
Medical Tourism
A couple of weeks ago I had a phone interview with a lady from Monash university who was doing a study into medical tourism. Finding out what motivated people to do such a thing and their personal feelings about making the decision.
My decision to embark on a trip to a foreign country over a year ago was one of (if not) the best decisions of my life. I have my health back and still over time I am slowly getting better and better. I also know other people who have benefitted from traveling for treatment and going overseas basically opens up a much wider scope of treatment options. Hence, I am a big advocate of medical tourism.
BUT, a venture such as what I did or any form of medical tourism should only be undertaken with great caution. There are a great many factors to consider that may effect getting treated properly. Even when I went to the USA, which has the same language and a similar culture there were differences in attitude and procedure that were very different.
However, this is not the main reason to be cautious. In your own country you are normally quite familiar with the ethics and safety of your medical system. In most countries the medical field is very closely scrutinised. In Australia it is impossible to practice medicine without a license and all hospitals and medical bodies are governed by an ethics committee. Above them there are state and federal laws ensuring that medicine is practiced safely and ethically. You go to another country you cannot be sure of this framework so it is important to do your homework. One of the reasons I chose to go to Chicago was I felt very secure with the medical practices of both the country and the hospital.
Another issue that you need to be wary of is the snake oil salesman. These disgusting vile creatures are the lowest of the low. They basically offer services that won't work. Praying on desperate individuals that are trying to rid themselves of illness is worthy of scum who are only one or two rungs from the bottom of societies filth. It is really important be able to identify this and this can be achieved by researching the doctor, the medical institution and the country you are thinking of visiting to see if it is possible for the unscrupulous to fall through the cracks.
At the end of the day the most important thing is to make sure you are comfortable doing what you are doing. If you are in a trial you must be prepared for the treatment to not work. No matter what there is always going to be some risk. As an individual you have to work out the cost and risk vs benefit. If you think it is ok, then go for it. Until next time, stay well:)
My decision to embark on a trip to a foreign country over a year ago was one of (if not) the best decisions of my life. I have my health back and still over time I am slowly getting better and better. I also know other people who have benefitted from traveling for treatment and going overseas basically opens up a much wider scope of treatment options. Hence, I am a big advocate of medical tourism.
BUT, a venture such as what I did or any form of medical tourism should only be undertaken with great caution. There are a great many factors to consider that may effect getting treated properly. Even when I went to the USA, which has the same language and a similar culture there were differences in attitude and procedure that were very different.
However, this is not the main reason to be cautious. In your own country you are normally quite familiar with the ethics and safety of your medical system. In most countries the medical field is very closely scrutinised. In Australia it is impossible to practice medicine without a license and all hospitals and medical bodies are governed by an ethics committee. Above them there are state and federal laws ensuring that medicine is practiced safely and ethically. You go to another country you cannot be sure of this framework so it is important to do your homework. One of the reasons I chose to go to Chicago was I felt very secure with the medical practices of both the country and the hospital.
Another issue that you need to be wary of is the snake oil salesman. These disgusting vile creatures are the lowest of the low. They basically offer services that won't work. Praying on desperate individuals that are trying to rid themselves of illness is worthy of scum who are only one or two rungs from the bottom of societies filth. It is really important be able to identify this and this can be achieved by researching the doctor, the medical institution and the country you are thinking of visiting to see if it is possible for the unscrupulous to fall through the cracks.
At the end of the day the most important thing is to make sure you are comfortable doing what you are doing. If you are in a trial you must be prepared for the treatment to not work. No matter what there is always going to be some risk. As an individual you have to work out the cost and risk vs benefit. If you think it is ok, then go for it. Until next time, stay well:)
Monday, May 13, 2013
A big week
I had lots planned for last week. I not only feel well enough now to be able to get off my BFA and do something, I actually feel driven to do so too. Honestly, this is a new feeling for me. I haven't felt like this in the best part of ten years and I had forgotten what is was like to feel motivated and driven. It is amazing to think that when you are sick what effect it has on you that you don't even realise.
Anyway, my motivation took a dive when I started developing a cold on Monday. But this was no time to crawl back under my stone. I just had to suck it up and push on which I did. Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.
Anyway, I had my first meeting on Tuesday morning. It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases. They do this by financially assisting sufferers with treatment, medication and equipment. I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).
I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure. Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability. From where I stood the Steve Waugh Foundation was a good fit.
My meeting was very constructive however, it was not quite the right fit. I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so. The Steve Waugh Foundation is set up to assist people financially. I want to directly advocate for people and help find treatments for them so it is not a perfect match. On the plus side I got some great contacts and was able to figure out my next step.
In the long run this is the direction I want to go in. I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others. So, watch this space. I have only just started.
On the other "professional" note I met with an old friend who has now become a neurologist. Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT. Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded. Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan. I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.
I also met with someone who could help me with my book. The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable. I honestly have to say that without her assistance I probably wouldn't finish the book. I was really quite nervous when I went to see her. I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish. Luckily, she said she really liked it and keep going. Phew. I once again could breathe and keep going with renewed confidence that I was doing a good job.
But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest. When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends. After I got sick I had to stop playing as I couldn't run the length of the wicket any more.
When I had my HSCT last year one of my goals was to play cricket again. So I hooked up with old side and went out for a game. As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches. And it did. According to the score card I was the best performing member of my team! Which doesn't say much, my team isn't very good but I'll take it anyway. Oh and yes, we got severely hammered. What counted for me though is that I played. And I not only played but I was competitive.
I have attached the score card. They have me down as playing as my nickname, Pommie. Which isn't so bad. At least I am not Gobble Gobble or Huggies.
Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek. What an awesome movie! Until next time, stay well:)
Anyway, my motivation took a dive when I started developing a cold on Monday. But this was no time to crawl back under my stone. I just had to suck it up and push on which I did. Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.
Anyway, I had my first meeting on Tuesday morning. It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases. They do this by financially assisting sufferers with treatment, medication and equipment. I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).
I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure. Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability. From where I stood the Steve Waugh Foundation was a good fit.
My meeting was very constructive however, it was not quite the right fit. I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so. The Steve Waugh Foundation is set up to assist people financially. I want to directly advocate for people and help find treatments for them so it is not a perfect match. On the plus side I got some great contacts and was able to figure out my next step.
In the long run this is the direction I want to go in. I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others. So, watch this space. I have only just started.
On the other "professional" note I met with an old friend who has now become a neurologist. Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT. Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded. Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan. I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.
I also met with someone who could help me with my book. The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable. I honestly have to say that without her assistance I probably wouldn't finish the book. I was really quite nervous when I went to see her. I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish. Luckily, she said she really liked it and keep going. Phew. I once again could breathe and keep going with renewed confidence that I was doing a good job.
But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest. When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends. After I got sick I had to stop playing as I couldn't run the length of the wicket any more.
When I had my HSCT last year one of my goals was to play cricket again. So I hooked up with old side and went out for a game. As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches. And it did. According to the score card I was the best performing member of my team! Which doesn't say much, my team isn't very good but I'll take it anyway. Oh and yes, we got severely hammered. What counted for me though is that I played. And I not only played but I was competitive.
I have attached the score card. They have me down as playing as my nickname, Pommie. Which isn't so bad. At least I am not Gobble Gobble or Huggies.
Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek. What an awesome movie! Until next time, stay well:)
Monday, May 6, 2013
A Big One
OK, I admit. It has been a while since my last post. But for good reason. I have been really busy. I have been making good headway with my book that I told you all about last time and I have been really busy with some other things too. I would love to share them all with you but not now. All in good time:)
Being busy has also given me a heap to write about and it is all good. I am really excited about the remainder of this year so I will keep you posted. But what to write about now? Well, if I stuck I can always return to my favourite subject. Me. I'll give you a wrap of my latest kidney op.
But before then I have something else to share. This is post number 400! And I have been writing it for over three years now. I hope you have all enjoyed reading.
Well, wrapping up my kidney surgery. I got the stent out under local this time which wasn't great but to get an anaesthetist to come in would have meant another week. I had to weigh up the pros and cons and decided that being awake for the procedure wasn't as bad as a week with a stent. FYI, stents suck.
It all went quite well though. I did have a small problem afterwards though. I was having some pain and irritation in the down stairs department and I thought I might have a UTI, which is reasonably common after kidney surgery. So I went to the doc and he agreed and put me on antibiotics. A day later I passed a couple of small kidney stones that were probably remnants of my kidney surgery.
Well it's nice to be through it. Until next time, stay well:)
Being busy has also given me a heap to write about and it is all good. I am really excited about the remainder of this year so I will keep you posted. But what to write about now? Well, if I stuck I can always return to my favourite subject. Me. I'll give you a wrap of my latest kidney op.
But before then I have something else to share. This is post number 400! And I have been writing it for over three years now. I hope you have all enjoyed reading.
Well, wrapping up my kidney surgery. I got the stent out under local this time which wasn't great but to get an anaesthetist to come in would have meant another week. I had to weigh up the pros and cons and decided that being awake for the procedure wasn't as bad as a week with a stent. FYI, stents suck.
It all went quite well though. I did have a small problem afterwards though. I was having some pain and irritation in the down stairs department and I thought I might have a UTI, which is reasonably common after kidney surgery. So I went to the doc and he agreed and put me on antibiotics. A day later I passed a couple of small kidney stones that were probably remnants of my kidney surgery.
Well it's nice to be through it. Until next time, stay well:)
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