Here is Chad's speech
Part 1
Part 2
Part 3
Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts
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:)
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:)
Tuesday, October 23, 2012
Second Prophecy
Ok, ok, ok. This one probably isn't really a prophecy as it is already happening. I am of course referring to the proliferation of social media and the role that it has in medicine.
I guess the part that hasn't happened yet is that certain members of the medical fraternity still refuse to acknowledge the influence that it has and will continue to have in an increasing manner. They seem to think of it as a tool for teenage girls to enhance their narcissism and spread gossip. But it is far more than that.
Inside the world of medicine social media is increasingly being used by professionals to let others know of what they have done, what they are doing and share new ideas and their experiences. It has been used for doctors to put live updates on an operation to the world via twitter. Procedures have even been videoed.
And if doctors still decide not to embrace social media they need to understand it. Why? Because their patients are using it. Never before have individuals and patients been so informed about the ailments which afflict them and the treatments that are available. If a doctor cannot talk candidly about the information a patient has found on the internet, the doctor will loose the confidence of that individual and patient care will be compromised.
One also has to be aware that for all the wonderful information there is to be found on the internet there is also nearly just as much bogus information and it will become the doctors job to assist the patient in deciphering the difference between quality information and bogus offerings by the snake oil salesmen.
Socialmedia is going to become more prevalent. As it stands there is a forum some where to do with any disease and or treatment. If doctors decide to ignore it they will essentially be disadvantaging themselves by keeping themselves from the latest information.
In short, social media and the internet is going to be a fantastic tool for both doctors and patients alike. But make sure that you are wary about what you read and check everything as there is a great deal of bogus info on the net. Until next time, stay well:)
I guess the part that hasn't happened yet is that certain members of the medical fraternity still refuse to acknowledge the influence that it has and will continue to have in an increasing manner. They seem to think of it as a tool for teenage girls to enhance their narcissism and spread gossip. But it is far more than that.
Inside the world of medicine social media is increasingly being used by professionals to let others know of what they have done, what they are doing and share new ideas and their experiences. It has been used for doctors to put live updates on an operation to the world via twitter. Procedures have even been videoed.
And if doctors still decide not to embrace social media they need to understand it. Why? Because their patients are using it. Never before have individuals and patients been so informed about the ailments which afflict them and the treatments that are available. If a doctor cannot talk candidly about the information a patient has found on the internet, the doctor will loose the confidence of that individual and patient care will be compromised.
One also has to be aware that for all the wonderful information there is to be found on the internet there is also nearly just as much bogus information and it will become the doctors job to assist the patient in deciphering the difference between quality information and bogus offerings by the snake oil salesmen.
Socialmedia is going to become more prevalent. As it stands there is a forum some where to do with any disease and or treatment. If doctors decide to ignore it they will essentially be disadvantaging themselves by keeping themselves from the latest information.
In short, social media and the internet is going to be a fantastic tool for both doctors and patients alike. But make sure that you are wary about what you read and check everything as there is a great deal of bogus info on the net. Until next time, stay well:)
Tuesday, June 12, 2012
A surprising consultation
If you read my post titled "Welcome to purgatory" last year, you would have realised that I had a less than happy consultation with my neurologist. To cut a long story short I felt like I was ignored and my neurologist was so anti the idea of a stem cell transplant that she wasn't going to help. From here I ended up getting all the information for a stem cell transplant together by myself and sending it off to Chicago. Looking back maybe I was a little hot headed and I could have been a little more diplomatic about the situation but what I did got me the treatment as soon as possible, so I'm glad I did it.
So last week I when I went back to see her I expected one of two things. First, she would have a real go at me and refuse to treat me, in which case I was prepared for a huge argument or second for her to be super clinical, do the consultation and send me on my way. I had a plan for this scenario too. But what she did really took me by surprise.
So what did she do? She was really complimentary of my tenacity and decision to go and get the procedure done. I certainly hadn't prepared for that eventuality so I didn't really know how to take it. We had a good chat and I think she was genuinely intrigued and looking forward to seeing the improvement.
However, it is always hard to get a read on doctors. They hide their emotions away so I found it hard to get a read on her body language or the tone of her voice so I couldn't really know if she was just saying the words or actually meant it. Personally I'd like to think she meant it and I believe it to be the truth. She was very keen to get all my Chicago notes and looking forward to getting the results of my next nerve conduction test in September, which will be the topic of my next blog.
Although I ironically felt under prepared for the consultation as it didn't take any of the avenues I had envisaged, I was buoyed by the meeting. So far the follow up care in Australia has been great from all the doctors I have seen, and I hope that my experience can assist the medical fraternity here in Australia to accept the benefits of stem cell transplants for AID's. Until next time, stay well:)
So last week I when I went back to see her I expected one of two things. First, she would have a real go at me and refuse to treat me, in which case I was prepared for a huge argument or second for her to be super clinical, do the consultation and send me on my way. I had a plan for this scenario too. But what she did really took me by surprise.
So what did she do? She was really complimentary of my tenacity and decision to go and get the procedure done. I certainly hadn't prepared for that eventuality so I didn't really know how to take it. We had a good chat and I think she was genuinely intrigued and looking forward to seeing the improvement.
However, it is always hard to get a read on doctors. They hide their emotions away so I found it hard to get a read on her body language or the tone of her voice so I couldn't really know if she was just saying the words or actually meant it. Personally I'd like to think she meant it and I believe it to be the truth. She was very keen to get all my Chicago notes and looking forward to getting the results of my next nerve conduction test in September, which will be the topic of my next blog.
Although I ironically felt under prepared for the consultation as it didn't take any of the avenues I had envisaged, I was buoyed by the meeting. So far the follow up care in Australia has been great from all the doctors I have seen, and I hope that my experience can assist the medical fraternity here in Australia to accept the benefits of stem cell transplants for AID's. Until next time, stay well:)
Saturday, April 28, 2012
Still Home Sweet Home
My word, it is good to be back. But I have to admit that it probably was the hardest trip I have ever had to do. The leg from Chicago to LA was pretty non eventful, but the one thing that never left was the constant fatigue. Every time it was time to get up and go somewhere (on the plane, off the plane etc...) I had this overwhelming feeling of lethargy because I quite simply didn't want to move. But sometimes you do what you must so you just have to suck it up and get on with it. And once I did I felt ok.
The main problem came about 3 hours away from home when I finally hit the wall. I started getting the sweats, feeling nauseas and extremely weak. I took my temperature and it was 99.5F. Oh dear, that is a low grade fever. I took some panadol and tried to relax and my temperature came down to 98.5F. Phew, I could start to relax but I still felt weak, nauseas and a general feeling of discomfort. Luckily when we got to Melbourne there was a wheel chair waiting for me, which is not just a easy way through the airport it is a way to fast track immigration so we got through the airport nice and quick.
At the other end it was lovely to see my kids waiting. And they looked very pleased to see me. I don't know whether it was because they were excited about the gifts we had for them or the fact they got the day off school? I'd like to think they were happy to see me;)
After a very smooth transition through the airport, the luck didn't continue and it took an hour to get home as the traffic was so heavy. Normally I wouldn't let that bother me but I'd had enough. Each extra minute I spent in the car felt like a small fire cracker being set off inside me fuelling my anxiety and frustration. The only thing I could do to relieve the stress is remind my father in law that his beloved Bombers lost to Collingwood by a point in the Anzac day blockbuster. Hehehe.
Finally I got home and it was a short trip from car to bed where I slept for best part of three hours. I would have slept longer but I had a doctors appointment so I dragged myself from the comfort of my soft quilted mattress and lovely soft doona and headed down to the doctor.
He gave me a work up seeing as I had a low grade fever which had returned when I saw him, wrote the scripts that they had recommended in Chicago, organised my blood work and told me to call him or go to emergency immediately if my temperature rose above 38C. (Back in Oz now so we're back on the metric system) After seeing the doc I had my blood drawn and then it was back home where I slept on the couch for a couple of hours, then to bed where I slept all night. Man, I needed the sleep.
Well, I think that is enough for today, until next time, stay well:)
The main problem came about 3 hours away from home when I finally hit the wall. I started getting the sweats, feeling nauseas and extremely weak. I took my temperature and it was 99.5F. Oh dear, that is a low grade fever. I took some panadol and tried to relax and my temperature came down to 98.5F. Phew, I could start to relax but I still felt weak, nauseas and a general feeling of discomfort. Luckily when we got to Melbourne there was a wheel chair waiting for me, which is not just a easy way through the airport it is a way to fast track immigration so we got through the airport nice and quick.
At the other end it was lovely to see my kids waiting. And they looked very pleased to see me. I don't know whether it was because they were excited about the gifts we had for them or the fact they got the day off school? I'd like to think they were happy to see me;)
After a very smooth transition through the airport, the luck didn't continue and it took an hour to get home as the traffic was so heavy. Normally I wouldn't let that bother me but I'd had enough. Each extra minute I spent in the car felt like a small fire cracker being set off inside me fuelling my anxiety and frustration. The only thing I could do to relieve the stress is remind my father in law that his beloved Bombers lost to Collingwood by a point in the Anzac day blockbuster. Hehehe.
Finally I got home and it was a short trip from car to bed where I slept for best part of three hours. I would have slept longer but I had a doctors appointment so I dragged myself from the comfort of my soft quilted mattress and lovely soft doona and headed down to the doctor.
He gave me a work up seeing as I had a low grade fever which had returned when I saw him, wrote the scripts that they had recommended in Chicago, organised my blood work and told me to call him or go to emergency immediately if my temperature rose above 38C. (Back in Oz now so we're back on the metric system) After seeing the doc I had my blood drawn and then it was back home where I slept on the couch for a couple of hours, then to bed where I slept all night. Man, I needed the sleep.
Well, I think that is enough for today, until next time, stay well:)
Sunday, February 26, 2012
It's cold today
If my kids were here today they would have gone nuts! When I woke up this morning and looked out of the window it was snowing. The last time that I saw real snow was back in 2002. My wife and I were on our honeymoon and we went to Niagara Falls on a bus tour. When we woke up in the morning there was a light dusting of snow on the ground and for some reason the tour guide was extremely apologetic about the awful weather. I don't think she really understood that the majority of Aussie tourists on the bus rarely saw snow and we were all running around outside like kids in a toy store having a great time.
I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing. However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.
Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors. It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests. The bottle they provided here was so much easier to use and it didn't leak either. The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.
After the drop off, it was time to see Dr Allen, the neurologist. Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals. Still everyone was extremely nice, something some service orientated staff in Australia could learn. After that it was time to see the doctor.
He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT. He really wanted to find out two things for Dr Burt. First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary. After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.
We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse. Unfortunate, but understandable. I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks. Anything more than that is a bonus.
Well, that is about it for me today, until next time, stay well:)
I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing. However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.
Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors. It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests. The bottle they provided here was so much easier to use and it didn't leak either. The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.
After the drop off, it was time to see Dr Allen, the neurologist. Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals. Still everyone was extremely nice, something some service orientated staff in Australia could learn. After that it was time to see the doctor.
He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT. He really wanted to find out two things for Dr Burt. First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary. After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.
We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse. Unfortunate, but understandable. I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks. Anything more than that is a bonus.
Well, that is about it for me today, until next time, stay well:)
Friday, February 10, 2012
Last doctor appointment
Well today I saw my new neurologist today and it was quite a welcome visit. After seeing the last one and not getting the answers I was after this really felt like a breath of fresh air. As it was the first time I'd seen him he did give me the full work down. I had to give him a full medical history and then it was onto the bed for a full medical exam. Strength tests reflexes etc...
After it was all over we then got into the nitty gritty of whether or not I would qualify for the stem cell transplant. We started by talking about what was involved with the stem cell treatment. I fairly sure that he wanted to get an idea of how well informed I was about the whole procedure. I think he was fairly impressed with my knowledge of the subject because we didn't talk about it for long.
He then wanted to question me about what I was getting myself into, and whether I understood what was involved. I am no stranger to major medical procedures, so this one was not much of a problem for me either. You might ask whether I was a little annoyed by his lines of questioning? No. I was a new patient who he had never met before. He need to be thorough and he was. I would have been more concerned if he wasn't. However, after a relationship has been forged and we understand each other a little better, one can expect a little more brevity.
So what did he tell me at the end? He thought I would comfortably qualify for the SCT. Unfortunately a little late to help me with all the tests I needed to do, but it was still very reassuring to know he thinks I would be accepted. Until next time, stay well:)
After it was all over we then got into the nitty gritty of whether or not I would qualify for the stem cell transplant. We started by talking about what was involved with the stem cell treatment. I fairly sure that he wanted to get an idea of how well informed I was about the whole procedure. I think he was fairly impressed with my knowledge of the subject because we didn't talk about it for long.
He then wanted to question me about what I was getting myself into, and whether I understood what was involved. I am no stranger to major medical procedures, so this one was not much of a problem for me either. You might ask whether I was a little annoyed by his lines of questioning? No. I was a new patient who he had never met before. He need to be thorough and he was. I would have been more concerned if he wasn't. However, after a relationship has been forged and we understand each other a little better, one can expect a little more brevity.
So what did he tell me at the end? He thought I would comfortably qualify for the SCT. Unfortunately a little late to help me with all the tests I needed to do, but it was still very reassuring to know he thinks I would be accepted. Until next time, stay well:)
Wednesday, February 8, 2012
Should a doctor be allowed to stop treating a patient?
A few times in my life a doctor has contacted me to inform me that they could no longer treat me. One went on maternity leave, another retired, a third changed practices and a staggering four doctors moved either interstate or overseas. (The lengths some people will go to not to treat me) But never has a doctor refused me treatment for professional reasons.
One of the blogs I like to read is from a gentleman that goes by the alias M D Whistleblower and the title of one of his recent posts was "When Should a Doctor Fire a Patient?" I have to say when I first read it I was quite alarmed. My first reaction was never! But after rereading it I calmed down a little and I hope that my response comes over a little more subdued, informed and educated. With my opinions I don't mind any disagreement. In fact I welcome but I do not welcome arguments that are bullish or aggressive.
I hope my rebuttal is both tempered and respected. So here goes. First I have to say in regard to M D Whistleblower he did say he rarely fires a patient, and the fact he blogged about it means that he obviously takes it very seriously.
Second, I do think there is one situation where it is OK to fire a patient, and that is if the doctor or the staff feel their safety maybe compromised. However, I do not feel as though the duty of care should end there. The doctor concerned should be charged with finding an institution or facility where the patient can be treated and the safety of everyone can be guaranteed.
What I do not agree with is the non compliant patient. As much as I try to convey to every patient that they should take accountability and responsibility for their own health and health care, I am not stupid enough to think that this won't happen. But in this case doctors need to be the intelligent ones and do their best to make sure the patient helps themselves. Doctors should not discard a patient just because they are exploiting potentially self destructive behaviour.
However, we have to also understand that doctors are doctors, not baby sitters and I think that the examples of litigation that M D Whistleblower alluded to are ridiculous and the ambulance chasing lawyers of no morals and little integrity should be ashamed of themselves for taking such a case. So should the patients involved.
As far as I am concerned, the process should be like this:-
One of the blogs I like to read is from a gentleman that goes by the alias M D Whistleblower and the title of one of his recent posts was "When Should a Doctor Fire a Patient?" I have to say when I first read it I was quite alarmed. My first reaction was never! But after rereading it I calmed down a little and I hope that my response comes over a little more subdued, informed and educated. With my opinions I don't mind any disagreement. In fact I welcome but I do not welcome arguments that are bullish or aggressive.
I hope my rebuttal is both tempered and respected. So here goes. First I have to say in regard to M D Whistleblower he did say he rarely fires a patient, and the fact he blogged about it means that he obviously takes it very seriously.
Second, I do think there is one situation where it is OK to fire a patient, and that is if the doctor or the staff feel their safety maybe compromised. However, I do not feel as though the duty of care should end there. The doctor concerned should be charged with finding an institution or facility where the patient can be treated and the safety of everyone can be guaranteed.
What I do not agree with is the non compliant patient. As much as I try to convey to every patient that they should take accountability and responsibility for their own health and health care, I am not stupid enough to think that this won't happen. But in this case doctors need to be the intelligent ones and do their best to make sure the patient helps themselves. Doctors should not discard a patient just because they are exploiting potentially self destructive behaviour.
However, we have to also understand that doctors are doctors, not baby sitters and I think that the examples of litigation that M D Whistleblower alluded to are ridiculous and the ambulance chasing lawyers of no morals and little integrity should be ashamed of themselves for taking such a case. So should the patients involved.
As far as I am concerned, the process should be like this:-
- Doctor and patient meet.
- Doctor and patient discuss diagnosis.
- Doctor and patient discuss treatment options.
- Doctor and patient decide on treatment options.
- From here the patient is charged with following the instructions that both parties have decided on. That includes doing tests, taking medications, attending follow up appointments etc...
You can't blame a doctor for giving a patient solid instructions of what to do in a consultation only to have them ignored. I mean where does it end? Is the doctor charged with holding the patients hand as he crosses the road? Or should they be there at bed time to make sure the patients milk is warmed to the correct temperature?
In conclusion, I think doctors should not be able to fire a patient. But I do understand it in order to protect themselves from litigation. And there in lies the problem. If a patient is the cause of their own downfall they should only have them self to blame. A little self responsibility please. So once again I have illustrated a fault in the system. Where exploitation of a system designed to help people is instead hindering by pushing up insurance prices and making doctors selective about the patients they treat. It is only bad for the patient community as a whole.
You can read the blog by M D Whistleblower by clicking the link above, or alternatively you can click here. Stay well:)
Friday, February 3, 2012
Final Preps
I really feel now as though everything now is final. I have had so many trips to see my GP in the last couple of months I have lost count. I almost think he could retire on the amount of money I have sent his way. But today was probably the last time I will see him until I get back from Chicago.
And just to stay true to form I stretched his mental prowess to the limit. I went to get all my medications for my trip away, which sounds simple enough, but it isn't. Firstly, I needed to get authority scripts for all my current medications, and we had to work out the right amount to take.
The fun part was all the drugs that had been requested from the doctors in Chicago. You see, many of them have different names and not all the drugs are available in the same preparation that they are available in over here. We managed to get the anti-fungal, the antibiotic and the anti-nausea all figured out, but the stumbling block was a drug called Norco. Norco is an analgesic medication that is unavailable in Australia, so we had to go for the next best option, which was Endone.
Once we had figured all this out, we had to write a letter to all and sundry explaining all the medication and why I had it with me. Apparently the airport security is the only place in America where it is impossible to get any form of customer service. So not only am I not American, but I have a medical device implanted and I am carrying analgesic medication. Fingers crossed that I am not strip searched and interrogated by the CIA.
I also had a small victory yesterday. It was time for my six month dental check. On my way there I remembered that I had to see a dentist in Chicago so I thought 'what the heck' and got Dr Jim to write a letter stating my exam day and that my teeth were in good condition. I then e-Mailed Paula to ask whether this would suffice for my dental exam and whether I would need one in Chicago? The answer was good! This saves me money, and the more I save the better.
Lastly, I got news from Chicago that my payment had been received. I now have all my ducks in a row for when I get there. I have one more doctors appointment and one more treatment and then all that is left is to pack and get there. On another note, I have always said that hospitals and medicine are not there to be the pinnacle of our lives. Live is for living, not being sick and getting better so tonight I'm taking my son to the MCG to watch the international 20twenty match between Australia and India. We are both very excited. Come on Aussie! Stay well:)
And just to stay true to form I stretched his mental prowess to the limit. I went to get all my medications for my trip away, which sounds simple enough, but it isn't. Firstly, I needed to get authority scripts for all my current medications, and we had to work out the right amount to take.
The fun part was all the drugs that had been requested from the doctors in Chicago. You see, many of them have different names and not all the drugs are available in the same preparation that they are available in over here. We managed to get the anti-fungal, the antibiotic and the anti-nausea all figured out, but the stumbling block was a drug called Norco. Norco is an analgesic medication that is unavailable in Australia, so we had to go for the next best option, which was Endone.
Once we had figured all this out, we had to write a letter to all and sundry explaining all the medication and why I had it with me. Apparently the airport security is the only place in America where it is impossible to get any form of customer service. So not only am I not American, but I have a medical device implanted and I am carrying analgesic medication. Fingers crossed that I am not strip searched and interrogated by the CIA.
I also had a small victory yesterday. It was time for my six month dental check. On my way there I remembered that I had to see a dentist in Chicago so I thought 'what the heck' and got Dr Jim to write a letter stating my exam day and that my teeth were in good condition. I then e-Mailed Paula to ask whether this would suffice for my dental exam and whether I would need one in Chicago? The answer was good! This saves me money, and the more I save the better.
Lastly, I got news from Chicago that my payment had been received. I now have all my ducks in a row for when I get there. I have one more doctors appointment and one more treatment and then all that is left is to pack and get there. On another note, I have always said that hospitals and medicine are not there to be the pinnacle of our lives. Live is for living, not being sick and getting better so tonight I'm taking my son to the MCG to watch the international 20twenty match between Australia and India. We are both very excited. Come on Aussie! Stay well:)
Wednesday, January 11, 2012
It Makes my Blood Boil
I asked myself recently if I thought I'd ever run out of things to blog about. Quite simply, no. Not for a long time anyway. Constantly I am getting inspiration from my own experiences, reading medical journals or other peoples blogs and with my stem cell transplant looming, my posts will become more of a diary. But one source of material I find I recently use is what people talk about on the medical forums.
One topic that consistently comes up in the cystinuria forum is people with kidney stones being refused pain medication because they are being labeled as 'drug seekers'. And that makes me angry. If you've ever had a kidney stone you would know why. They hurt. They hurt a lot. Being a man I cannot compare, but I'm told the pain is equivalent to child birth.
Now I get that kidney stones are an easy symptom for 'drug seekers' to mimic. I get that people with chronic kidney pain may become addicted as a result. But to leave people in that sort of pain is barbaric and unforgivable. I will elaborate.
Nine out of ten times these people who suffer from cystinuria can prove they have a chronic kidney condition that gives them an insane amount of kidney stones. Yet, ER and primary care doctors constantly refuse to treat their pain. My point being that if you can prove you have a disorder like this you should be treated. In my hey day, before I was receiving proper care for my kidney disease (And I freely admit that was my fault) I grew a one centimeter stone in three months.
And even though I admit that a chronic kidney stone patient could become addicted to pain meds (because of the nature of the pain treatment) I believe that the pros and cons of addiction to pain relief for a bona fide medical condition need to be weighed up and addiction, or feeding addiction is a small price to pay to make sure a patient is pain free.
If there are any doctors that a reading this and would like to weigh in I would love to hear. I would also like to take the opportunity to say that I have never been addicted to pain meds. Whilst I believe some people have a penchant for them, I am the opposite. I don't like the way they make me feel and when the pain goes away naturally I enjoy seeing the back of them. I'd also like to add that I have never found myself being denied meds on suspicion I might be a 'drug seeker'.
I'm going to finish with a story from the cystinuria facebook forum. A doctor told a lady with stone pain that it was similar to mild menstrual cramp and analgesic pain meds weren't required. Well if that's the case I'm glad I'm not a girl. Severe cramps must be agony.
Next time I'll get back talking about my SCT. Until then, stay well:)
One topic that consistently comes up in the cystinuria forum is people with kidney stones being refused pain medication because they are being labeled as 'drug seekers'. And that makes me angry. If you've ever had a kidney stone you would know why. They hurt. They hurt a lot. Being a man I cannot compare, but I'm told the pain is equivalent to child birth.
Now I get that kidney stones are an easy symptom for 'drug seekers' to mimic. I get that people with chronic kidney pain may become addicted as a result. But to leave people in that sort of pain is barbaric and unforgivable. I will elaborate.
Nine out of ten times these people who suffer from cystinuria can prove they have a chronic kidney condition that gives them an insane amount of kidney stones. Yet, ER and primary care doctors constantly refuse to treat their pain. My point being that if you can prove you have a disorder like this you should be treated. In my hey day, before I was receiving proper care for my kidney disease (And I freely admit that was my fault) I grew a one centimeter stone in three months.
And even though I admit that a chronic kidney stone patient could become addicted to pain meds (because of the nature of the pain treatment) I believe that the pros and cons of addiction to pain relief for a bona fide medical condition need to be weighed up and addiction, or feeding addiction is a small price to pay to make sure a patient is pain free.
If there are any doctors that a reading this and would like to weigh in I would love to hear. I would also like to take the opportunity to say that I have never been addicted to pain meds. Whilst I believe some people have a penchant for them, I am the opposite. I don't like the way they make me feel and when the pain goes away naturally I enjoy seeing the back of them. I'd also like to add that I have never found myself being denied meds on suspicion I might be a 'drug seeker'.
I'm going to finish with a story from the cystinuria facebook forum. A doctor told a lady with stone pain that it was similar to mild menstrual cramp and analgesic pain meds weren't required. Well if that's the case I'm glad I'm not a girl. Severe cramps must be agony.
Next time I'll get back talking about my SCT. Until then, stay well:)
Sunday, January 8, 2012
Stem Cell Transplant
I have had a fair few questions about my stem cell transplant recently. And rightly so. A stem cell transplant can mean a number of things from deriving a small amount of stem cells from fat tissues purely for cosmetic purposes all the way up to a total bone marrow transplant. Here are the details of what I will hopefully be going through.
The full name of my procedure is an autologous hematopoietic stem cell transplantation. Definitions are as follows:-
Autologous:- Derived or transferred from the same individuals body*
Hematopoietic:- The formation of blood or blood cells in the body*
Stem Cell:- An unspecialised cell that gives rise to a specialised cell, such as a blood cell*
Transplant:- To transfer (tissue or organ) from one body or body part to another*
*Definitions from www.thefreedictionary.com
So, in short, the procedure is the donation of blood stem cell from myself to myself. But it is a fraction more complicated than that. The following diagram gives a brief explanation of the process:
The hard part comes in three sections. There is the first round of chemotherapy that is used to stimulate the growth of stem cells so they can harvest as many they can. Also have to have Neupogen injections for one week to assist in this endeavor. Both the chemo and neupogen are not without their side effects, which is the fun part.
Second, is the intensive round of chemotherapy. We all know someone who has had cancer and the difficulty that they have had. Aside from me not having cancer it really is not much different. The iidea of this round of chemo is to completely destroy all white blood cells, so when the stem cell are reintroduced they create a brand new immune system and there is nothing left to copy. If I simply re-grew a copy of my old immune system I would still have the antibodies that were attacking my nervous system.
Third, after the second round of chemo I'll be completely neutropenic. Meaning I will have no immune system and unable to fight off infection. Even a common cold could be life threatening, so I have to be really careful for the next few months to make sure I don't catch anything. Even though they have a timeline for when they think you should reach certain milestones, what really dictates when you reach those milestones is your white blood count as that is the best indication of the strength of your immune system.
Next time I will post my transplant schedule, so all going to plan, you will be able to know when I will be facing each stage. Until then, stay well:)
The full name of my procedure is an autologous hematopoietic stem cell transplantation. Definitions are as follows:-
Autologous:- Derived or transferred from the same individuals body*
Hematopoietic:- The formation of blood or blood cells in the body*
Stem Cell:- An unspecialised cell that gives rise to a specialised cell, such as a blood cell*
Transplant:- To transfer (tissue or organ) from one body or body part to another*
*Definitions from www.thefreedictionary.com
So, in short, the procedure is the donation of blood stem cell from myself to myself. But it is a fraction more complicated than that. The following diagram gives a brief explanation of the process:
The hard part comes in three sections. There is the first round of chemotherapy that is used to stimulate the growth of stem cells so they can harvest as many they can. Also have to have Neupogen injections for one week to assist in this endeavor. Both the chemo and neupogen are not without their side effects, which is the fun part.
Second, is the intensive round of chemotherapy. We all know someone who has had cancer and the difficulty that they have had. Aside from me not having cancer it really is not much different. The iidea of this round of chemo is to completely destroy all white blood cells, so when the stem cell are reintroduced they create a brand new immune system and there is nothing left to copy. If I simply re-grew a copy of my old immune system I would still have the antibodies that were attacking my nervous system.
Third, after the second round of chemo I'll be completely neutropenic. Meaning I will have no immune system and unable to fight off infection. Even a common cold could be life threatening, so I have to be really careful for the next few months to make sure I don't catch anything. Even though they have a timeline for when they think you should reach certain milestones, what really dictates when you reach those milestones is your white blood count as that is the best indication of the strength of your immune system.
Next time I will post my transplant schedule, so all going to plan, you will be able to know when I will be facing each stage. Until then, stay well:)
Saturday, January 7, 2012
Why are doctors conservative?
I caught up with an old friend for the first time in ages last week. It would have been almost ten years and wow, how things have changed. Ten years ago if we arranged to catch up we probably would have met at a cafe, restaurant or pub. Now we met at a playground so the kids could run around and we could have at least five minutes uninterrupted adult conversation before the inevitable scraped knee or "dad, can you push me on the swing?"
But it was really great to catch up. It had actually been so long that this guy had not only started a family since the last time I saw him, but he had put himself through medical school and was now of all things, a consultant neurologist. Inevitably, the conversation started to a medical field as we both shared a common interest, albeit from different angles. Him as a doctor, me as a patient.
Their was one really refreshing side to the conversation though. I genuinely felt as though I was discussing the topic as an equal, even when it came to discussing my personal situation. I don't know whether it was because we are friends, he has a respect for me intellectually as we both went to university together or that this is simply the style of medicine he wished to practice. I'd like to think that it is a product of all three. But the point is I felt like an equal.
As the conversation progressed the topic evolved to why doctors seemed to be more conservative in their treatment approach to what a patient would be? Apparently there are studies that show that patients are greater risk takers than doctors. I have done a search online for such articles, but have not found much. (admittedly, I did not look especially hard)
From this I derive two questions. Firstly, why are doctors more conservative? And second, who's right, doctor or patient? So why are doctors more conservative than their patients? As I've said before, when you have a chronic illness, it is with you 24/7. It does not take a holiday, it doesn't even take tea break. For the most part doctors only get a 15 minute snapshot of the disease in a clinical setting. It is not nearly enough to even gain a vague understanding of what is experienced by the patient. Coupled with the fact that medical students are taught an academic perspective to disease and not an empathic perspective means they really have no idea.
But they do have a great deal of contact with patients when they are undergoing a treatment. When I was in hospital for my brain surgery, I was visited by a number of doctors every day. During the six hour surgery there were four doctors present for the whole procedure. So they get a very good understanding of the trauma a patient goes through for each different type of procedure.
But unless you can weigh up the trauma of a procedure against the trauma of living with a disease, you are not qualified to answer that question. So who's right? Well both are right. So all the knowledge should be put on the table. All available options should be discussed, and then I believe the patient should make the decision. Doctors should also take into account the individual patients understanding of the disease and treatment options. If it seems like the patient is taking an intelligent risk the doctor should support that. It is the patients life. They should be the ones that make the ultimate decision.
I would also like to add that it is the patient who takes the ultimate risk. I understand that there is a burden to a doctor if something goes wrong. But every treatment, no matter how small has risk. If a doctor is not prepared to adversely affect a patient, no matter how hard they try to help, they should not be a doctor. Unfortunately, unforeseen tragedy is always going to be a part of medicine. But that should not stop us trying, because the surest way to lose is to not try at all. Until next time, stay well:)
But it was really great to catch up. It had actually been so long that this guy had not only started a family since the last time I saw him, but he had put himself through medical school and was now of all things, a consultant neurologist. Inevitably, the conversation started to a medical field as we both shared a common interest, albeit from different angles. Him as a doctor, me as a patient.
Their was one really refreshing side to the conversation though. I genuinely felt as though I was discussing the topic as an equal, even when it came to discussing my personal situation. I don't know whether it was because we are friends, he has a respect for me intellectually as we both went to university together or that this is simply the style of medicine he wished to practice. I'd like to think that it is a product of all three. But the point is I felt like an equal.
As the conversation progressed the topic evolved to why doctors seemed to be more conservative in their treatment approach to what a patient would be? Apparently there are studies that show that patients are greater risk takers than doctors. I have done a search online for such articles, but have not found much. (admittedly, I did not look especially hard)
From this I derive two questions. Firstly, why are doctors more conservative? And second, who's right, doctor or patient? So why are doctors more conservative than their patients? As I've said before, when you have a chronic illness, it is with you 24/7. It does not take a holiday, it doesn't even take tea break. For the most part doctors only get a 15 minute snapshot of the disease in a clinical setting. It is not nearly enough to even gain a vague understanding of what is experienced by the patient. Coupled with the fact that medical students are taught an academic perspective to disease and not an empathic perspective means they really have no idea.
But they do have a great deal of contact with patients when they are undergoing a treatment. When I was in hospital for my brain surgery, I was visited by a number of doctors every day. During the six hour surgery there were four doctors present for the whole procedure. So they get a very good understanding of the trauma a patient goes through for each different type of procedure.
But unless you can weigh up the trauma of a procedure against the trauma of living with a disease, you are not qualified to answer that question. So who's right? Well both are right. So all the knowledge should be put on the table. All available options should be discussed, and then I believe the patient should make the decision. Doctors should also take into account the individual patients understanding of the disease and treatment options. If it seems like the patient is taking an intelligent risk the doctor should support that. It is the patients life. They should be the ones that make the ultimate decision.
I would also like to add that it is the patient who takes the ultimate risk. I understand that there is a burden to a doctor if something goes wrong. But every treatment, no matter how small has risk. If a doctor is not prepared to adversely affect a patient, no matter how hard they try to help, they should not be a doctor. Unfortunately, unforeseen tragedy is always going to be a part of medicine. But that should not stop us trying, because the surest way to lose is to not try at all. Until next time, stay well:)
Friday, January 6, 2012
2012 -The Year Ahead
Well if you believe the Mayan calendar, 2012 will be the end of the world! Fortunately for me, I don't believe that. If I did, I certainly wouldn't be spending my final year of life recovering from an arduous and grueling stem cell transplant. And it is an overview of my 2012 that I plan on sharing with you today.
Well one thing is for certain, it is going to be an interesting and busy year. I am under no illusions, it is going to be tough. Really tough. But even with the nausea, vomiting, lethargy, hair loss, generally feeling like crap and all the other delightful side effects that come with chemotherapy and being neutropenic, I will have to consider it a wonderful year if the treatment works.
Mapping out the year for me is probably best if I go backwards. In October I have a goal. I need to be fit and healthy. At least well enough to travel across the world in an airplane. What is my goal I hear you ask? Well, if there was a sure fire sign that the world was coming to an end (which it isn't) it is that my brother is getting married!
After nearly 40 years of bachelorhood he is going to tie the knot with his significant other in the UK in October. I'm excited! And what makes it even more exciting is I'm yet to meet the lucky lady and their brand new son. I've always said that even though hospitals and medicine are a big part of my life I believe that that is not a reason for living. We live for the good things in life and October for me will be massive. As well as the wedding my wife and I are planning to take the kids around the world so it should be an amazing trip.
In all honesty it is really good timing. I will have had enough time to recover and prepare for the trip and during my stem cell transplant I will have something to look forward to as well as the obvious like seeing the kids after three months, or being able to sleep pain free or even being able to go for a run. (Now, now Andy. Keep it real. Don't get ahead of yourself.)
I think that brings us to the stem cell transplant. I will cover this in more detail later and then in insanely more details as I embark upon the journey. Suffice to say that it will be hard and intense. Whoever said it was about the journey not the destination never had a stem cell transplant. I'd love to be able to skip the next four months and wake up just in time for the good part. The healing. Sadly, that won't be the case, but whilst I'm in Chicago I do plan have at least a tiny bit of fun. It would be a shame to travel all that way to a place I've never been before and not spend at least one day seeing everything. I think it will also be important to give myself something right in the moment to look forward to. Sure, the long term gains are undeniable. But it is also nice to have short term goals to help with the here and now.
I think one of the things that is really important for me to share with you all is that although I am 99% certain to go to Chicago, there is still no absolute certainty I will make it into the trial, and I might be headed back to Australia with my tail between my legs. But I can't think like that. I need to stay positive and assume I will make it into the trial. If I don't I will cross that bridge when I come to it.
On other notes, my health is much bigger than just one treatment. The year has got off to a flying start with already one IVIG treatment and a kidney x-ray which came back clear of all stones! That is now six months. Lets hope that I can keep that up all year. I think/hope it may be a good year for the kidneys.
Well, that's a brief summary of my year ahead. It should be an interesting one. I'll keep you posted as I go. Until then, stay well:)
Well one thing is for certain, it is going to be an interesting and busy year. I am under no illusions, it is going to be tough. Really tough. But even with the nausea, vomiting, lethargy, hair loss, generally feeling like crap and all the other delightful side effects that come with chemotherapy and being neutropenic, I will have to consider it a wonderful year if the treatment works.
Mapping out the year for me is probably best if I go backwards. In October I have a goal. I need to be fit and healthy. At least well enough to travel across the world in an airplane. What is my goal I hear you ask? Well, if there was a sure fire sign that the world was coming to an end (which it isn't) it is that my brother is getting married!
After nearly 40 years of bachelorhood he is going to tie the knot with his significant other in the UK in October. I'm excited! And what makes it even more exciting is I'm yet to meet the lucky lady and their brand new son. I've always said that even though hospitals and medicine are a big part of my life I believe that that is not a reason for living. We live for the good things in life and October for me will be massive. As well as the wedding my wife and I are planning to take the kids around the world so it should be an amazing trip.
In all honesty it is really good timing. I will have had enough time to recover and prepare for the trip and during my stem cell transplant I will have something to look forward to as well as the obvious like seeing the kids after three months, or being able to sleep pain free or even being able to go for a run. (Now, now Andy. Keep it real. Don't get ahead of yourself.)
I think that brings us to the stem cell transplant. I will cover this in more detail later and then in insanely more details as I embark upon the journey. Suffice to say that it will be hard and intense. Whoever said it was about the journey not the destination never had a stem cell transplant. I'd love to be able to skip the next four months and wake up just in time for the good part. The healing. Sadly, that won't be the case, but whilst I'm in Chicago I do plan have at least a tiny bit of fun. It would be a shame to travel all that way to a place I've never been before and not spend at least one day seeing everything. I think it will also be important to give myself something right in the moment to look forward to. Sure, the long term gains are undeniable. But it is also nice to have short term goals to help with the here and now.
I think one of the things that is really important for me to share with you all is that although I am 99% certain to go to Chicago, there is still no absolute certainty I will make it into the trial, and I might be headed back to Australia with my tail between my legs. But I can't think like that. I need to stay positive and assume I will make it into the trial. If I don't I will cross that bridge when I come to it.
On other notes, my health is much bigger than just one treatment. The year has got off to a flying start with already one IVIG treatment and a kidney x-ray which came back clear of all stones! That is now six months. Lets hope that I can keep that up all year. I think/hope it may be a good year for the kidneys.
Well, that's a brief summary of my year ahead. It should be an interesting one. I'll keep you posted as I go. Until then, stay well:)
Tuesday, January 3, 2012
doctor vs patient funny
I don't know why but when I saw the bit with the patient laughing I laughed too. When I first got Kidney stones the docs kept wanting to touch my stomach and instantly I'd tense up because I'd find it so ticklish. Also, good advice for doctors, if you do a knee jerk test, stand to the side. Stay well:)
Wednesday, December 14, 2011
Monday, December 12, 2011
My kids love this joke!
A man walks into a doctors surgery and says "doctor, doctor. You have to help me. I only have 59 seconds to live!"
The doctor replies "Just wait a minute please."
The patient screams back "but I only have 59 seconds to live!!!!!!!!!!!!!"
The doctor replies "Just wait a minute please."
The patient screams back "but I only have 59 seconds to live!!!!!!!!!!!!!"
Tuesday, November 29, 2011
Nephrology done
I like to go and see my nephrologist. He is realistic, honest and punctual. Punctual? I hear you say. Yes, you heard it right. I have been seeing him for over five years now and he has never been more than five minutes late. But that is not what I like most about him.
What I like most about him is that he brings out the best in me. When I first started seeing him he gave me a list of instructions and then asked me whether or not such a thing would be feasible, because if I wasn't going to do it then we should find another treatment regime. This is one of the few times I have liked a doctor right from the start.
The nephrologist I was seeing before this one basically laid down the law saying that this is what I had to do and there was no way around it. He even gave me instructions that I knew I was never going to follow. In the end it put me on a mini self destruct pattern as I would show him by not following his instructions. I ended up only hurting myself.
But my new doctor is great. Instead of feeling like the naughty school boy kept back for detention with Dame Snap. I feel like I am part of a partnership, working together to achieve a common goal. The doc puts some suggestions on the table, and we discuss them in a civilised, intelligent manner. We then decide if it will fit in with my life style, and if it does, away we go.
On the down side he does insist I do a 24 hour urine collection every six months which aren't much fun, but hey, when you have an illness sometimes you've gotta do what you gotta do. Another plus was that he understood exactly why I wanted to do the stem cell transplant. He even wrote a letter to the doctors at Northwestern saying, and I quote "There is no renal contra-indication to an autologous stem cell transplant."
What a champion. If only it was always that easy. Until next time, stay well:)
What I like most about him is that he brings out the best in me. When I first started seeing him he gave me a list of instructions and then asked me whether or not such a thing would be feasible, because if I wasn't going to do it then we should find another treatment regime. This is one of the few times I have liked a doctor right from the start.
The nephrologist I was seeing before this one basically laid down the law saying that this is what I had to do and there was no way around it. He even gave me instructions that I knew I was never going to follow. In the end it put me on a mini self destruct pattern as I would show him by not following his instructions. I ended up only hurting myself.
But my new doctor is great. Instead of feeling like the naughty school boy kept back for detention with Dame Snap. I feel like I am part of a partnership, working together to achieve a common goal. The doc puts some suggestions on the table, and we discuss them in a civilised, intelligent manner. We then decide if it will fit in with my life style, and if it does, away we go.
On the down side he does insist I do a 24 hour urine collection every six months which aren't much fun, but hey, when you have an illness sometimes you've gotta do what you gotta do. Another plus was that he understood exactly why I wanted to do the stem cell transplant. He even wrote a letter to the doctors at Northwestern saying, and I quote "There is no renal contra-indication to an autologous stem cell transplant."
What a champion. If only it was always that easy. Until next time, stay well:)
Friday, November 25, 2011
It's All in Your Head
In the patient forums that I participate in there has been a popular topic recently and that is pain. Pain is the bodies way of telling us there is something wrong and we need to do something. Some pains are minor, like a paper cut, some are major, like a kidney stone.
Pain is one of the most highly studied and most common phenomenons in medicine, and for the most part we are extremely effective in treating it. But not always. Pain comes in thousands upon thousands of shapes, sizes and intensities and it is impossible for doctors to know how to treat all of then. For the more complicated cases there is a lot of trial and error until they find the answer.
This is where I believe as a patient you can take charge of your own care. No one is going to understand your pain quite like you, and no one knows yourself quite like you do. If you do your research, you, yourself have the best chance of beating the problem.
In 2006 as I have said many times I was in hospital for three weeks. It was the worst time of my life, and three month later, when the final remnant of stone was removed from my body by the surgeon, the damage had been done. My emotional state was akin to the aftermath of a hurricane, except there was nobody to clean up. And even though I had no stone I still had kidney pain.
The doctors said it was impossible as I had no stone or blockage. They couldn't figure out why, so they concluded that it was all in my head or I was a drug seeker. I can assure you I am no addict or seeker. Honestly, if I have pain the drugs are great, but if I don't have pain I want nothing to do with them. They make me fell weird in a not so good way, and bung up my intestines something fierce.
But there I was. Pain, but no blockage. Looking back it must have been really bad. Mentally, I was pretty much rock bottom, yet I felt compelled to do something about it. So I researched, and I found this source that had a rather alternative view. For the life of me I can't find out where. I had somehow managed to muster my strength enough to fix my problems, but god forbid I would take notes or use the information to help anyone else. I was too wrapped up in my own misery, so for that I apologise to all my readers.
But I do remember the underlying theory. Basically, pain has a memory which sits either in the brain or the nervous system. The more you experience a type of pain the stronger that memory becomes, and every time that memory is triggered you can feel pain which can be almost as intense as the real pain originally experienced. To me this made perfect sense and was a theory worth exploring. It explained why I was feeling pain and why the doctors couldn't explain it. So how do I treat it?
The author then went on to explain that for every memory there was a trigger that fired it off. That trigger could be anything. Stress, anxiety, a smell, certain foods etc. Basically, it could be anything, the important thing was to identify it. So every time I felt pain (which was nearly ever day) I had to think about what I had done the hour or two prior so I could identify the trigger.
Personally I identified two triggers. First, if I ever felt a little dehydrated, and second anxiety, which was really a negative spiral. I got anxious, I would feel pain, so I would get more anxious..... I now was fairly certain I had identified my triggers, now I needed to find out what to do next.
Apparently for every 'on' trigger, there was also an 'off' trigger. Now I just had to figure out what that was. Normally the off trigger was something similar to the on trigger, so I started to have a glass of water every time I was a little dehydrated and I felt the pain coming on. And you know what, it worked. But it did not help with the anxiety. Occasionally I would get anxious about having another stone and hey presto! Back came the pain.
Finding a trigger for that was a little harder, so I ended up seeing a hypnotherapist. I don't know exactly how she did it but at the start I told her the problem and then she got me to sit in a chair and.... Well I'm not sure really. I remember I felt like I was in that slumber just before you fall asleep where I was still vaguely conscious. She asked a bunch of questions but I have no idea what about.
After it was over, I felt no different, and I really thought the exercise had been a waste of time. However, a couple of weeks later I noticed that I had had no pain. I still felt anxiety from time to time, but funnily enough not with kidney stones. Every time I thought about stones the problem seemed exceptionally manageable. She had not given me an off switch, she had done one better, removed the on switch!
This worked for me. I'm not saying it will necessarily work for you, but it is harmless and if you are scratching your head it might be worth a try. Step by step this is how it works.
Pain is one of the most highly studied and most common phenomenons in medicine, and for the most part we are extremely effective in treating it. But not always. Pain comes in thousands upon thousands of shapes, sizes and intensities and it is impossible for doctors to know how to treat all of then. For the more complicated cases there is a lot of trial and error until they find the answer.
This is where I believe as a patient you can take charge of your own care. No one is going to understand your pain quite like you, and no one knows yourself quite like you do. If you do your research, you, yourself have the best chance of beating the problem.
In 2006 as I have said many times I was in hospital for three weeks. It was the worst time of my life, and three month later, when the final remnant of stone was removed from my body by the surgeon, the damage had been done. My emotional state was akin to the aftermath of a hurricane, except there was nobody to clean up. And even though I had no stone I still had kidney pain.
The doctors said it was impossible as I had no stone or blockage. They couldn't figure out why, so they concluded that it was all in my head or I was a drug seeker. I can assure you I am no addict or seeker. Honestly, if I have pain the drugs are great, but if I don't have pain I want nothing to do with them. They make me fell weird in a not so good way, and bung up my intestines something fierce.
But there I was. Pain, but no blockage. Looking back it must have been really bad. Mentally, I was pretty much rock bottom, yet I felt compelled to do something about it. So I researched, and I found this source that had a rather alternative view. For the life of me I can't find out where. I had somehow managed to muster my strength enough to fix my problems, but god forbid I would take notes or use the information to help anyone else. I was too wrapped up in my own misery, so for that I apologise to all my readers.
But I do remember the underlying theory. Basically, pain has a memory which sits either in the brain or the nervous system. The more you experience a type of pain the stronger that memory becomes, and every time that memory is triggered you can feel pain which can be almost as intense as the real pain originally experienced. To me this made perfect sense and was a theory worth exploring. It explained why I was feeling pain and why the doctors couldn't explain it. So how do I treat it?
The author then went on to explain that for every memory there was a trigger that fired it off. That trigger could be anything. Stress, anxiety, a smell, certain foods etc. Basically, it could be anything, the important thing was to identify it. So every time I felt pain (which was nearly ever day) I had to think about what I had done the hour or two prior so I could identify the trigger.
Personally I identified two triggers. First, if I ever felt a little dehydrated, and second anxiety, which was really a negative spiral. I got anxious, I would feel pain, so I would get more anxious..... I now was fairly certain I had identified my triggers, now I needed to find out what to do next.
Apparently for every 'on' trigger, there was also an 'off' trigger. Now I just had to figure out what that was. Normally the off trigger was something similar to the on trigger, so I started to have a glass of water every time I was a little dehydrated and I felt the pain coming on. And you know what, it worked. But it did not help with the anxiety. Occasionally I would get anxious about having another stone and hey presto! Back came the pain.
Finding a trigger for that was a little harder, so I ended up seeing a hypnotherapist. I don't know exactly how she did it but at the start I told her the problem and then she got me to sit in a chair and.... Well I'm not sure really. I remember I felt like I was in that slumber just before you fall asleep where I was still vaguely conscious. She asked a bunch of questions but I have no idea what about.
After it was over, I felt no different, and I really thought the exercise had been a waste of time. However, a couple of weeks later I noticed that I had had no pain. I still felt anxiety from time to time, but funnily enough not with kidney stones. Every time I thought about stones the problem seemed exceptionally manageable. She had not given me an off switch, she had done one better, removed the on switch!
This worked for me. I'm not saying it will necessarily work for you, but it is harmless and if you are scratching your head it might be worth a try. Step by step this is how it works.
- Identify your pain. Describe it to yourself.
- Rule out physiological reasons for the pain.
- If no physiological reason identifiable, look for your on trigger.
- Once you have found it, try to identify your off switch.
- If necessary, repeat steps 3 and 4.
So the doctors were right. It was all in my head. But they were also wrong. As Morpheus said in the Matrix, "Your mind makes it real". The pain I felt was as debilitating and nasty as nearly any other pain I felt. It needed to be treated, not ignored. Luckily, I found a solution that worked for me. If you suffer chronic pain I hope you find a solution that works for you too. Stay well:)
Thursday, November 24, 2011
Calm Down.
I have just read through my last couple of posts and although I wouldn't change them because that is how I felt at the time and for the most part still feel now. However, I did take a big swipe at my doctor and doctors in general, and I do think that was a little harsh.
When it comes to my neurologist I have no doubt that every decision she makes, she makes in the best interest of her patient. But I don't think she really understand how much time I have spent researching this, how much time I have spent thinking about this. I know it is a long hard process. I know I might come out worse than when I went in. I know it might not work. I know I might even die.
I know the statistics. I know all about the procedure and yet I still want to do it, and I think that should be my choice to make. After all, I could go and do many stupid and dangerous things if I wanted to and not need sign off by anyone. I could go base jumping, swim with hungry sharks or play chicken with a brown snake. If I wanted to be really stupid and dangerous I could even start an argument with my wife;)
My point is that for everything dangerous there is normally a reward or potential of reward. And normally there is no one there to stop you. So my point is if I am informed and willing, why can't I? Stay well:
When it comes to my neurologist I have no doubt that every decision she makes, she makes in the best interest of her patient. But I don't think she really understand how much time I have spent researching this, how much time I have spent thinking about this. I know it is a long hard process. I know I might come out worse than when I went in. I know it might not work. I know I might even die.
I know the statistics. I know all about the procedure and yet I still want to do it, and I think that should be my choice to make. After all, I could go and do many stupid and dangerous things if I wanted to and not need sign off by anyone. I could go base jumping, swim with hungry sharks or play chicken with a brown snake. If I wanted to be really stupid and dangerous I could even start an argument with my wife;)
My point is that for everything dangerous there is normally a reward or potential of reward. And normally there is no one there to stop you. So my point is if I am informed and willing, why can't I? Stay well:
Wednesday, November 23, 2011
Where to from here?
I just got a message asking me if I was going to be OK and what am I going to do? Well, I have to say that I'm still a little angry. Especially when I read that the first SCT was done on a non-cancer patient in 1968, and it has taken them over 30 years to look at doing this for auto-immune diseases. So why so long? There is no money in the cured, but there is in the living sick. If the research had been pioneered twenty years ago, we might already be done with the trials and moved on to a working treatment by now.
Anyway, I digress and I sound really bitter. But I will be OK, and where to from here? Well first I will employ what I call the Tiger Woods ten steps technique. No, get your mind out the gutter. I'm not referring to his sex addiction. The late Earl Woods told Tiger that if he played a bad shot he was allowed to be angry for ten steps. After then he had to get it back together and focus on his next shot.
For me, it is OK for me to be upset. But I'll give myself until the end of the day to be like then, and tomorrow I'll refocus and reengage. As for tomorrow? Well, I haven't been told no. This is more of a speed bump. And what could I expect really? A ticket to Chicago and an all expenses stay at North Western hospital? Not quite.
So tomorrow, my first steps will be to contact North Western and let them know the state of play and then go and see my GP for a referral to the new neurologist so I can get in before Christmas. Aside from that I will keep reminding myself I am strong, I am resilient and I will find a way. Until next time, stay well:)
Anyway, I digress and I sound really bitter. But I will be OK, and where to from here? Well first I will employ what I call the Tiger Woods ten steps technique. No, get your mind out the gutter. I'm not referring to his sex addiction. The late Earl Woods told Tiger that if he played a bad shot he was allowed to be angry for ten steps. After then he had to get it back together and focus on his next shot.
For me, it is OK for me to be upset. But I'll give myself until the end of the day to be like then, and tomorrow I'll refocus and reengage. As for tomorrow? Well, I haven't been told no. This is more of a speed bump. And what could I expect really? A ticket to Chicago and an all expenses stay at North Western hospital? Not quite.
So tomorrow, my first steps will be to contact North Western and let them know the state of play and then go and see my GP for a referral to the new neurologist so I can get in before Christmas. Aside from that I will keep reminding myself I am strong, I am resilient and I will find a way. Until next time, stay well:)
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