Don't get me wrong, I am a huge advocate for HSCT for AIDs. After all, I'm living proof that it works. But in my first prophecy I did say that eventually HSCT would b superseded by a better, less invasive treatment. I believe it is only a matter of time, and when that time comes we should embrace it and promote it. You can read all about my first prophecy here:
http://shakesandstones.blogspot.com.au/2012/10/my-first-prophercy.html
And this next article points to research that may show that we maybe closer than I first thought. Although that still maybe some time away. Now I maybe a geeky little medical nerd because I really get quit excited by this, but I think it is worth getting excited about. Have a read, the article is here. Stay well:)
http://www.sciencedaily.com/releases/
Thursday, December 20, 2012
Tuesday, December 11, 2012
Third Prophecy
You might have thought I'd forgotten about this line for my blog. Well, I haven't. What with the carpel tunnel surgery etc... it has been a a while since I've been able to type anything of substance for a long period. But now I am recovering it has been a little easier.
And this prophecy is a doozy;) It is not so much a question of a new technology or science promoting medicine, boldly pioneering our way into the future. It isn't about dumbing it down and going back to grass roots medicine. It is basically about taking a small step backward, surveying the landscape thoroughly and then heading in a different direction.
Which direction? I can answer that for you too. I believe that it should and eventually head in the direction of Functional Medicine (FM). And what is FM? Basically, FM is about treating the why as opposed to the what. Let me explain further.
At the moment medicine has a fairly regimented system for treating patients. First, the patient comes to the doctor complaining of symptoms. Doctor does an examination of the patient and takes a medical history. Tests maybe ordered if necessary. After all the results have been received a diagnosis of what is wrong is made and treatment administered accordingly.
But FM asks another critical question. Why? Why do we have this problem and what is the cause. Not just what is it? If you ask that question you can cut off the problem at the source. If the underlying cause of the problem is defeated then the problem should disappear. Treating the symptom is like simply like trying to stop a fire hydrant by using your bare hands. It is impossible to stop the water and if you let go it all comes gushing out just as before. Why not try simply turning it off at the tap?
So why are we currently doing it the traditional way? Well the cynic in me has three theories. First, the litigation procedure in most Western countries has tied up the medical system in so much bureaucracy and procedure, most doctors wouldn't dare treating outside of current protocols whether it was in the patients best interests or not.
Second, big pharmaceutical companies like it this way. It is in their financial interest to have you constantly pushing against the fire hydrant and popping one of their expensive pills every day for the rest of your life. If you have a simple workable solution you will cut off their revenue stream. Unfortunately, pharmaceutical companies are much more loyal to their shareholders and profit margins than their patients.
Lastly, insurance companies and governments (bill payers) want to know exactly what they are shelling out their dish for. If it doesn't have a name or the prescribed treatment is not approved for that name, they won't pay.
Well, it is only a matter of time before FM starts being recognised and indoctrinated as standard practice. Well, I believe that anyway. The big question is how much time? Check out this link. Stay well:)
And this prophecy is a doozy;) It is not so much a question of a new technology or science promoting medicine, boldly pioneering our way into the future. It isn't about dumbing it down and going back to grass roots medicine. It is basically about taking a small step backward, surveying the landscape thoroughly and then heading in a different direction.
Which direction? I can answer that for you too. I believe that it should and eventually head in the direction of Functional Medicine (FM). And what is FM? Basically, FM is about treating the why as opposed to the what. Let me explain further.
At the moment medicine has a fairly regimented system for treating patients. First, the patient comes to the doctor complaining of symptoms. Doctor does an examination of the patient and takes a medical history. Tests maybe ordered if necessary. After all the results have been received a diagnosis of what is wrong is made and treatment administered accordingly.
But FM asks another critical question. Why? Why do we have this problem and what is the cause. Not just what is it? If you ask that question you can cut off the problem at the source. If the underlying cause of the problem is defeated then the problem should disappear. Treating the symptom is like simply like trying to stop a fire hydrant by using your bare hands. It is impossible to stop the water and if you let go it all comes gushing out just as before. Why not try simply turning it off at the tap?
So why are we currently doing it the traditional way? Well the cynic in me has three theories. First, the litigation procedure in most Western countries has tied up the medical system in so much bureaucracy and procedure, most doctors wouldn't dare treating outside of current protocols whether it was in the patients best interests or not.
Second, big pharmaceutical companies like it this way. It is in their financial interest to have you constantly pushing against the fire hydrant and popping one of their expensive pills every day for the rest of your life. If you have a simple workable solution you will cut off their revenue stream. Unfortunately, pharmaceutical companies are much more loyal to their shareholders and profit margins than their patients.
Lastly, insurance companies and governments (bill payers) want to know exactly what they are shelling out their dish for. If it doesn't have a name or the prescribed treatment is not approved for that name, they won't pay.
Well, it is only a matter of time before FM starts being recognised and indoctrinated as standard practice. Well, I believe that anyway. The big question is how much time? Check out this link. Stay well:)
Thursday, December 6, 2012
Monday, December 3, 2012
Relief at last
Well that is a little unfair. I dealt with CIDP for over ten years and I'm finally getting relief from that. I had carpal tunnel symptoms (post HSCT) for about ten weeks and "at last" I feel better. But it is a patients right to be fickle and the biggest thorn in my side was the CTS.
Both surgeries went really well. I was out of hospital both times by lunch time and two weeks after the surgery on my right hand (which I had done first) I have pretty much regained full use with the exception of a few weight bearing tasks.
On the downside it is the reason I have not been blogging much recently which is a problem I intend to rectify. I have also been insanely busy as well, but this little episode has slowed down my progress here too. I have to look at the bigger picture though. When I am fully recovered from both hands I will be better off with everything.
Anyway, if you are curious about what it looked like this is a picture when I had the bandage taken off after five days on my right hand and again what it looks like now after eighteen days. Oh, and a picture of the bandage on my left hand.
Until next time, stay well:)
Both surgeries went really well. I was out of hospital both times by lunch time and two weeks after the surgery on my right hand (which I had done first) I have pretty much regained full use with the exception of a few weight bearing tasks.
On the downside it is the reason I have not been blogging much recently which is a problem I intend to rectify. I have also been insanely busy as well, but this little episode has slowed down my progress here too. I have to look at the bigger picture though. When I am fully recovered from both hands I will be better off with everything.
Anyway, if you are curious about what it looked like this is a picture when I had the bandage taken off after five days on my right hand and again what it looks like now after eighteen days. Oh, and a picture of the bandage on my left hand.
Until next time, stay well:)
Sunday, November 25, 2012
Carpel tunnel recovery
Video recovery. It's almost a week since I made it so apologies for the slackness.
Stay well:)
Tuesday, November 13, 2012
Thursday, November 8, 2012
Bad habits...
In my mindless surfing of the internet I came across this article that I think is applicable to anyone and everyone. It is about bad habits that negatively effect your health and yes. I am guilty of two of these. Can you guess which?
Bad habits
Stay well:)
Bad habits
Stay well:)
Thursday, November 1, 2012
Pats on the back
May I suggest you start by having a cheeky little look at this link.
In case you can't or decided not to read it, it is about a ten year old boy who had life saving revolutionary surgery in my home town of Melbourne. It was a great outcome for medical science, the patient and doctors and staff involved. But while the news about the procedure was very positive and everyone involved was patting themselves on the back I don't think everyone should be congratulating themselves.
The medical team and the parents of the patient decided on the surgery a year ago following a stroke the boy suffered. From then it took a year for the surgery to go ahead. A whole year where the patient was suffering regular fits, struggling from poor general health and lethargy and during his developmental years would have had his development stunted both physically and mentally. He would have also felt terrible from the fourteen different pharmaceutical medications he was on that didn't work (but hey, Glaxo would have loved him;).
So it begs the question why the delay? You could excuse them if the specialist equipment took a while to be manufactured in the United States. Or it took a while to train up a medical team for the procedure. But no. Once again it was the magnificent bureaucratic bullshit and the ethical, or should I say 'unethical committee' that held thing up.
And how ridiculously stupid. Here is a young boy with deteriorating health and next to no quality of life being made to wait for life changing and potentially life saving surgery. Sure it was a world first surgery and a trip into the unknown but I honestly have to say that most of (if not all) the people on the ethics committee have never been faced with a debilitating disease that does not respond to conventional treatment. I've said it before and I'll say it again. As far as I am concerned the current medical establishment considers it fit to let people suffer provided it is done ethically.
Now don't get me wrong, I do understand that ethics committees are there to protect people both collectively and individually. But in cases like this I really don't understand why it takes a year to approve. So to the medical team and doctors involved with the surgery and the patient and family and friends I congratulate you. As for the ethics committee, for every day you procrastinated on the decision for this surgery you should be made to give yourself an uppercut.
Until next time, stay well:)
Monday, October 29, 2012
Am I Fickle?
One of the luxuries of being a patient is
that you have the luxury of being treated.
You can decide your favored treatment option and then change your mind
right up to the eleventh hour. You can
change your doctor of preference as and when you please without a good reason
if that is what you wish to do.
Now I certainly don’t recommend that this
is what you do, but if there is a good reason for changing your mind you should
be aloud to do so. And realistically
that is what I have done recently. Twice
in fact.
Now just to clarify, my recovery has been
going really well and I am more than happy with the way things have been
progressing, but you don’t have something as major as a stem cell transplant
and expect everything to go perfectly.
And I have had my speed bumps.
They haven’t been huge or insurmountable but they are there.
The first and biggest problem is this
horrid carpel tunnel syndrome (CTS) that has been creeping up on me and slowly
getting worse over the last couple of months.
I’m convinced it is different to the arm pain that I experienced before
my transplant, the symptoms I have now are typical carpel tunnel symptoms. Before my whole arm from below the shoulder
hurt.
So the question is what to do and what is
causing it? Well although the clinical
diagnosis of my symptoms is CTS the doctors like to confirm with a more
objective test. This would normally be a
nerve conduction study but the remnants of my CIDP would mask any conclusive
data that I received from this test.
They could do an MRI of my hands but MRI’s and brain implants don’t
really mix too well. So I have to revert
to the clinical diagnosis.
It is also important to decide on a
treatment option. And this is where we
run into difficulties. In my transplant
notes regarding my recovery it says not to have any surgery within one year of
my transplant date. But most of my
doctors here agree that carpel release surgery is the best way to go and my
neuro here in Melbourne (who is normally very conservative) is actually pushing
for it.
My GP has proposed a short-term solution of
cortisone injections. And here comes my
first fickle moment. To date I have
followed the instructions of the people in Chicago, but I believe that I need
the surgery. Research shows the longer
CTS goes untreated the greater the chance of long term or permanent
damage. So I think I am changing my mind
about following the Chicago instructions.
The second fickle moment is to do with my
prophylactic medication. I have been advised
by the good people in Chicago to stop taking Bactrim, an antibiotic, as it has
been six months post transplant. However
the hematologist I see in Melbourne has had a look at my blood count and said
that while my white blood count is fine my lymphocytes are still very low and I
should continue with Bactrim to avoid chest infections. So again my fickle nature has ignored the
advice of the good people in Chicago and gone with the doctors here in
Melbourne.
But honestly, is it really fickle? I have weighed up my options, done my research
and made my own decision. One thing that
hasn’t changed is I have always taken responsibility for my health and
ultimately I will make the decisions about my treatment. I am right or wrong? Only time will tell. But I guarantee you this. I going into this with my eyes wide
open. Well, until a general anesthetic
anyway. Until next time, stay wellJ
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:)
Friday, October 19, 2012
Lance Armstrong
Assuming that you have any contact to media, and given that you are reading this post on the interweb I'm assuming that you do, you would have been privy to the spectacular fall form grace of the once heroic and indestructible Lance Armstrong. In terms of the sporting impositions that have been placed upon him I really have no comment as I simple do not know enough about it. But I do believe that if he is guilty (and that is not for me to decide) then you need to face the consequences. Do the crime do the time.
However, although one part of his life has been seriously marred by this scandal I would implore people not to forget the fantastic work he has done. I am of course, pointing to the work he has done with his charity "Live Strong". He has brought a great deal of awareness to cancer sufferers all over the world and raised a huge amount of money to help sufferers and assist with research.
So I ask one thing of you all. Do not let his charity or his charity work pay for his indiscretions. This will not punish him but all the cancer patients he is trying to help. The charity will have suffered enough without individuals deciding to pull their support away too. Until next time, stay well:)
However, although one part of his life has been seriously marred by this scandal I would implore people not to forget the fantastic work he has done. I am of course, pointing to the work he has done with his charity "Live Strong". He has brought a great deal of awareness to cancer sufferers all over the world and raised a huge amount of money to help sufferers and assist with research.
So I ask one thing of you all. Do not let his charity or his charity work pay for his indiscretions. This will not punish him but all the cancer patients he is trying to help. The charity will have suffered enough without individuals deciding to pull their support away too. Until next time, stay well:)
Tuesday, October 16, 2012
My First Prophercy
Well, I am no Nostradamus but I do think that common sense does dictate that my prophecy may come true. So I thought I'd start off with an easy one and work up from there. It is also close to my heart as where the technology has come from so far has changed my life. I want to write about the evolution of HSCT for autoimmune diseases.
Now I have to say that I am mildly disappointed at how far the technology has come at present but that is another post for another day. However, it is here now and that is a great thing. Especially for me. So how is this a prophecy?
Well the first thing that is really important to know is that even with what we do know about the human body and medicine there is a whole lot more we don't know. With HSCT for AIDs we basically destroy the immune system in what is quite an aggressive process in order to be able to regrow an immune system that does not have a defect.
I believe in the future we will be able to look deeper into the immune system and instead of destroying the whole immune system, just destroy the defective part. There is two parts to this. First, being able to identifying exactly where the defect is, and then having the right drugs and or tools to simply attack that
specific point. The technology will eventually be good enough that there will be no need for stem cells or hospitalisations.
I believe that it is just a matter of time. I would love to know what you think. Until next time, stay well:)
Now I have to say that I am mildly disappointed at how far the technology has come at present but that is another post for another day. However, it is here now and that is a great thing. Especially for me. So how is this a prophecy?
Well the first thing that is really important to know is that even with what we do know about the human body and medicine there is a whole lot more we don't know. With HSCT for AIDs we basically destroy the immune system in what is quite an aggressive process in order to be able to regrow an immune system that does not have a defect.
I believe in the future we will be able to look deeper into the immune system and instead of destroying the whole immune system, just destroy the defective part. There is two parts to this. First, being able to identifying exactly where the defect is, and then having the right drugs and or tools to simply attack that
specific point. The technology will eventually be good enough that there will be no need for stem cells or hospitalisations.
I believe that it is just a matter of time. I would love to know what you think. Until next time, stay well:)
Sunday, October 14, 2012
Qantas Sucks
I thought about writing this post a couple of weeks ago after a horror trip from Melbourne to LA. However I decided against it as I started this blog to write about my medical adventures and anything health related that took my fancy. Occasionally I have strayed away from this but never to really vent about something outside this scope.
But on my return voyage from London to Australia I saw something that really made my blood boil. But it is best I start at the beginning when we left Melbourne back at the start of September. First, our flight was eight hours delayed then we were reallocated thirty rows back without any warning where the chairs did not work properly and the kids didn't receive their kids meals. Finally, when my daughter was sick (partly because we were seated at the very back now) we received no help.
I wrote a letter of complaint and in return we received a $200 gift certificate, which I believe hardly enough to placate or silence me as the monetary recompense was not nearly enough to cover the financial loss we incurred due to the delay. And given I purchased four round the world tickets I found their attempt at placating me a little insulting. Ironically though the trip on the way back was much better for us but for one incident that didn't even effect me but I did find disgusting and disgraceful on behalf of Qantas.
As we boarded the plane there was a lady there that was clearly having difficulty walking as she had two crutches and visible foot orthotics. She politely asked at the desk about someone wheel chairing her to the plane and she was subsequently ignored so she struggled down the jetway be herself. I stopped her and asked her if she needed any help and as I looked into her eyes I saw a very familiar picture that I have seen in many others including myself.
It is a look of shame and embarrassment at having to need the assistance and also pride at not insisting on it. I remembered my last overseas trip where I had my transplant and I needed the help. Thankfully now I don't but this situation made me angry. Help is supposed to be there for those who need it and it wasn't. It seemed very different to my Disneyland post where people were, in my opinion, routing a system designed to help people like this poor lady at the Qantas gate.
A couple of weeks ago I was talking with a friend in London who is disabled and she said "it's funny, during the paralympics people looked admirably at the disabled. Now they just see a bunch of dole bludgers. I sincerely hope that this is not the mentality of Qantas and its staff but in the last two years I have flown a number of Airlines including Virgin International, Virgin Australia, Virgin America, Jet Star, Air New Zealand American Airlines, Delta Airlines and British Airway and by far and a way yhe worst were Qantas. Well until next time, stay well:)
But on my return voyage from London to Australia I saw something that really made my blood boil. But it is best I start at the beginning when we left Melbourne back at the start of September. First, our flight was eight hours delayed then we were reallocated thirty rows back without any warning where the chairs did not work properly and the kids didn't receive their kids meals. Finally, when my daughter was sick (partly because we were seated at the very back now) we received no help.
I wrote a letter of complaint and in return we received a $200 gift certificate, which I believe hardly enough to placate or silence me as the monetary recompense was not nearly enough to cover the financial loss we incurred due to the delay. And given I purchased four round the world tickets I found their attempt at placating me a little insulting. Ironically though the trip on the way back was much better for us but for one incident that didn't even effect me but I did find disgusting and disgraceful on behalf of Qantas.
As we boarded the plane there was a lady there that was clearly having difficulty walking as she had two crutches and visible foot orthotics. She politely asked at the desk about someone wheel chairing her to the plane and she was subsequently ignored so she struggled down the jetway be herself. I stopped her and asked her if she needed any help and as I looked into her eyes I saw a very familiar picture that I have seen in many others including myself.
It is a look of shame and embarrassment at having to need the assistance and also pride at not insisting on it. I remembered my last overseas trip where I had my transplant and I needed the help. Thankfully now I don't but this situation made me angry. Help is supposed to be there for those who need it and it wasn't. It seemed very different to my Disneyland post where people were, in my opinion, routing a system designed to help people like this poor lady at the Qantas gate.
A couple of weeks ago I was talking with a friend in London who is disabled and she said "it's funny, during the paralympics people looked admirably at the disabled. Now they just see a bunch of dole bludgers. I sincerely hope that this is not the mentality of Qantas and its staff but in the last two years I have flown a number of Airlines including Virgin International, Virgin Australia, Virgin America, Jet Star, Air New Zealand American Airlines, Delta Airlines and British Airway and by far and a way yhe worst were Qantas. Well until next time, stay well:)
Wednesday, October 10, 2012
A Fantastic Trip
Although I'm still away our overseas trip is coming to a close and I think it is safe to say that we all had a really great time. I really think it is amazing how much we managed to pack into our holiday and I have to say I'm looking forward to the end now and returning home. It is hard to believe that whilst I have been away I have surprised myself with what I have been able to accomplish.
I think that the first thing that has struck me is my stamina. I noticed this at my fellow CIDPer and HSCT recipient Bob's survivor party when I was able to stand for a long period of time without my stick and more incredibly not looking for a chair. Prior to my stem cell transplant the best I could have done would have been about ten minutes before I had to sit down. Now, just the simple act of standing does not bother me.
The second thing I noticed was my ability to walk long distances. In my travels we have visited Disneyland, Chicago, London and Paris and I have to say that without the use of a car we walked everywhere. I didn't manage to measure the lengths of my walks but if I was to hazard a guess I would probably say the the maximum distance would have been about 10 kilometres. I also managed to scale to the top of the Arc de Triomphe which would have been about 300 steps.
But probably my biggest success would have been in the re-ignation of an old time passion of mine. These days in the UK the country is slowly filling up with indoor ski slopes. Now it is no comparison to the lavish and vast ski slopes of Europe or America, but for someone in my position it was perfect. A gentle slope of about 200 metres. Certainly no where near the challenges I would confront myself with 15 years ago but under the circumstances, probably the most daunting skiing experience I have ever had.
Now I am not in the business of overcoming one medical issue (CIDP) and replacing it with another (like a broken leg). But it was on my to do list so I wanted to get it done. So off I went with my brother, an accomplished skier in his own right, to have a crack. I have to say the first couple of runs were really tough, but the return to form was quite successful and the improvement was substantial by the time our hour was out and it was time to be ushered off the snow. Saying that the standard I achieved was no where near where it used to be but there will be another time and who know where that will take me?
Anyway, tomorrow we return to Australia after a wonderful and successful trip. It will be good to be home and hopefully you will hear from me more often once I return. Until then, stay well:)
I think that the first thing that has struck me is my stamina. I noticed this at my fellow CIDPer and HSCT recipient Bob's survivor party when I was able to stand for a long period of time without my stick and more incredibly not looking for a chair. Prior to my stem cell transplant the best I could have done would have been about ten minutes before I had to sit down. Now, just the simple act of standing does not bother me.
The second thing I noticed was my ability to walk long distances. In my travels we have visited Disneyland, Chicago, London and Paris and I have to say that without the use of a car we walked everywhere. I didn't manage to measure the lengths of my walks but if I was to hazard a guess I would probably say the the maximum distance would have been about 10 kilometres. I also managed to scale to the top of the Arc de Triomphe which would have been about 300 steps.
But probably my biggest success would have been in the re-ignation of an old time passion of mine. These days in the UK the country is slowly filling up with indoor ski slopes. Now it is no comparison to the lavish and vast ski slopes of Europe or America, but for someone in my position it was perfect. A gentle slope of about 200 metres. Certainly no where near the challenges I would confront myself with 15 years ago but under the circumstances, probably the most daunting skiing experience I have ever had.
Now I am not in the business of overcoming one medical issue (CIDP) and replacing it with another (like a broken leg). But it was on my to do list so I wanted to get it done. So off I went with my brother, an accomplished skier in his own right, to have a crack. I have to say the first couple of runs were really tough, but the return to form was quite successful and the improvement was substantial by the time our hour was out and it was time to be ushered off the snow. Saying that the standard I achieved was no where near where it used to be but there will be another time and who know where that will take me?
Anyway, tomorrow we return to Australia after a wonderful and successful trip. It will be good to be home and hopefully you will hear from me more often once I return. Until then, stay well:)
Saturday, September 22, 2012
Back in Chitown
It is so nice to be here again, and this time without the daunting roadblock of a stem cell transplant to sour the mood. Actually in is completely different in every way. There will be appointments and tests, but there will be no nasty treatments and I'm looking forward to it as for once the I am expecting good news!
THe other big difference between this time and last time is that we have the kids with us. And what would a trip to the USA be without a trip to Disneyland? We all had a great time and I surprised myself by the amount of walking that I managed to do without getting tired. We nearly managed to do every ride in both parks. There is definitely something to be said about going outside of the US school holidays as queue times were down and the streets weren't so busy.
The highlight for me would of had to be radiator springs. It look just like the movie and you seriously would have thought you were there if it wasn't for all the people. I have to say that Disney Land is the best theme park I have ever been to and even after 57 years of operation. Disney, I take my hat off to you. But there was one thing that bugged me.
Now I expect this to be a little controversial, so here goes. First, I do believe that people have the right to choose their own lifestyle and eat what they like and indulge in their own vices etc. I also think that all people should have the right to medical attention whether they contribute to their condition or not. But it should not entitle you to more than anyone else.
So what happened? We were standing in the queue when two obese people, who would not have been older than 30 pulled up in their scooters, got off, entered through the exit gate jumping the queue and got straight on the ride. Now I'm all for these people being assisted, but when someone who clearly does not take care of themselves gets to jump the queue ahead of everyone else I think that is wrong. Did I also mention they stank of stale cigarette smoke? I know a heap of people that have been hit with a crippling disease simply because of bad luck and no fault of their own and almost feel too proud or guilty to jump the queue.
I feel that the queue jumping exception was created to help the unfortunate and others now simply take advantage of it. I'm reminded of an episode of the Simpsons where Homer puts on a pile of weight so he can claim disability and work from home exposing a loophole in the system. It also saddens me to see so many people with uncontrollable disabilities who try their absolute hardest to get better and can't. these other people don't seem to care and in fact are rewarded for their laziness.
However, like I said, it bugs me. Next time hopefully I will be reporting good news to you from my Chicago followup. Until then, stay well:)
THe other big difference between this time and last time is that we have the kids with us. And what would a trip to the USA be without a trip to Disneyland? We all had a great time and I surprised myself by the amount of walking that I managed to do without getting tired. We nearly managed to do every ride in both parks. There is definitely something to be said about going outside of the US school holidays as queue times were down and the streets weren't so busy.
The highlight for me would of had to be radiator springs. It look just like the movie and you seriously would have thought you were there if it wasn't for all the people. I have to say that Disney Land is the best theme park I have ever been to and even after 57 years of operation. Disney, I take my hat off to you. But there was one thing that bugged me.
Now I expect this to be a little controversial, so here goes. First, I do believe that people have the right to choose their own lifestyle and eat what they like and indulge in their own vices etc. I also think that all people should have the right to medical attention whether they contribute to their condition or not. But it should not entitle you to more than anyone else.
So what happened? We were standing in the queue when two obese people, who would not have been older than 30 pulled up in their scooters, got off, entered through the exit gate jumping the queue and got straight on the ride. Now I'm all for these people being assisted, but when someone who clearly does not take care of themselves gets to jump the queue ahead of everyone else I think that is wrong. Did I also mention they stank of stale cigarette smoke? I know a heap of people that have been hit with a crippling disease simply because of bad luck and no fault of their own and almost feel too proud or guilty to jump the queue.
I feel that the queue jumping exception was created to help the unfortunate and others now simply take advantage of it. I'm reminded of an episode of the Simpsons where Homer puts on a pile of weight so he can claim disability and work from home exposing a loophole in the system. It also saddens me to see so many people with uncontrollable disabilities who try their absolute hardest to get better and can't. these other people don't seem to care and in fact are rewarded for their laziness.
However, like I said, it bugs me. Next time hopefully I will be reporting good news to you from my Chicago followup. Until then, stay well:)
Wednesday, September 5, 2012
Do No Harm?
Have you ever read the Hippocratic Oath? It is a greek medical text which basically covers the moral code by which most medical professionals will be sworn to. However, it is fair to say that since its writing (presumed to be by Hippocrates, the father of modern medicine) and original translation it has been altered a number of times.
But the part that I would like to draw attention to is the part that says "Do No Harm." I was talking to a doctor about this very point recently and it is something that many take very seriously. After thinking about it though I think it is a huge contradiction. Most medical procedures carry some form of risk. Most drugs have side effects and all surgeries be they minor or major carry some form of risk which could be harmful.
So should the phrase be "Do No Intentional Harm"? Well I think this too would be a contradiction. I cannot think of a single surgery or treatment that requires hospitalisation. I mean if we are going to be pedantic even a needle prick to administer IV fluids to an individual suffering dehydration is harmful. And from here we can go all the way up the scale to major open heart surgery. The point is it is always harmful.
On dictionary.com harm is defined as physical injury or mental damage. But I think that we need to see beyond the literal definition and start to look at the intention of the phrase, which in my opinion should read like this, "Do No Intentional Harm that does not have an overall long term benefit to the patient".
I am sure that smarter people than I have hotly debated this topic in the past which is why most modern adaptations of the Hippocratic Oath do not carry the phrase. But it is a debate that is quite close to my heart as my stem cell transplant is a harmful procedure that even carries the risk of death. But for me the short term harm has been strongly outweighed by the long term benefit.
I have thought about this topic of discussion for a while but recent events have spurred me to write about it. I guess there is a line that needs to be drawn where the risks and harm of whatever procedure is in question needs to be weighed up against the risks and harm that will be caused by inaction. I'd love to have an answer for you but at the moment I stand conflicted. As I process the information I will hopefully be able to draw some conclusions and when and if I do I will share them. But for now stay well:)
But the part that I would like to draw attention to is the part that says "Do No Harm." I was talking to a doctor about this very point recently and it is something that many take very seriously. After thinking about it though I think it is a huge contradiction. Most medical procedures carry some form of risk. Most drugs have side effects and all surgeries be they minor or major carry some form of risk which could be harmful.
So should the phrase be "Do No Intentional Harm"? Well I think this too would be a contradiction. I cannot think of a single surgery or treatment that requires hospitalisation. I mean if we are going to be pedantic even a needle prick to administer IV fluids to an individual suffering dehydration is harmful. And from here we can go all the way up the scale to major open heart surgery. The point is it is always harmful.
On dictionary.com harm is defined as physical injury or mental damage. But I think that we need to see beyond the literal definition and start to look at the intention of the phrase, which in my opinion should read like this, "Do No Intentional Harm that does not have an overall long term benefit to the patient".
I am sure that smarter people than I have hotly debated this topic in the past which is why most modern adaptations of the Hippocratic Oath do not carry the phrase. But it is a debate that is quite close to my heart as my stem cell transplant is a harmful procedure that even carries the risk of death. But for me the short term harm has been strongly outweighed by the long term benefit.
I have thought about this topic of discussion for a while but recent events have spurred me to write about it. I guess there is a line that needs to be drawn where the risks and harm of whatever procedure is in question needs to be weighed up against the risks and harm that will be caused by inaction. I'd love to have an answer for you but at the moment I stand conflicted. As I process the information I will hopefully be able to draw some conclusions and when and if I do I will share them. But for now stay well:)
Saturday, September 1, 2012
I can't remember...
And I can't. Much of it is a genuine blank. And what can't I remember? I talking about my hospital stay in Chicago. If I didn't know any better I would say I was there for three days, not three weeks. And I got to thinking why can't I remember? As I'm currently drawing on my experiences as a patient to write my book, not remembering doesn't serve me very well. And it's not just my Chicago stay, I struggle to remember most of my hospitalisations.
And I do have some theories. First, the drugs they give you can have a side effect of memory loss. Anaesthetics, analgesia and sedatives, which are all administered regularly in hospital can all cause temporary amnesia. But there are some big gaps here and I cannot attribute all my forgetfulness to this.
Second, I think that as people we remember what is memorable and hospitals are boring. Really boring. When the highlight of your day is the doctor coming round to visit you clearly know it's not like a trip to Disney Land. So maybe it is not a case of forgetting, just not committing the experience to memory in the first place.
Lastly, and I think this one makes the most sense, we forget because we don't want to remember. The mind is a powerful tool which is subject to stress and hardship just like our bodies. And like are bodies try to heal themselves, so do our minds. And how they do it? By exercising the bad memories.
I don't know if it is just me who suffers from this or everyone. I also don't know which theory is correct, or whether it is something else or a combination. All I know is that I struggle to remember. And that is probably a good thing. After all, who wants to remember stuff like that? Stay well:)
And I do have some theories. First, the drugs they give you can have a side effect of memory loss. Anaesthetics, analgesia and sedatives, which are all administered regularly in hospital can all cause temporary amnesia. But there are some big gaps here and I cannot attribute all my forgetfulness to this.
Second, I think that as people we remember what is memorable and hospitals are boring. Really boring. When the highlight of your day is the doctor coming round to visit you clearly know it's not like a trip to Disney Land. So maybe it is not a case of forgetting, just not committing the experience to memory in the first place.
Lastly, and I think this one makes the most sense, we forget because we don't want to remember. The mind is a powerful tool which is subject to stress and hardship just like our bodies. And like are bodies try to heal themselves, so do our minds. And how they do it? By exercising the bad memories.
I don't know if it is just me who suffers from this or everyone. I also don't know which theory is correct, or whether it is something else or a combination. All I know is that I struggle to remember. And that is probably a good thing. After all, who wants to remember stuff like that? Stay well:)
Thursday, August 30, 2012
My book
As I have said before, I am thinking of writing a book. I thought I would share with you my introduction (first draft) and see what you think. Did you like it? Was it interesting? Would you buy it? Let me know. Stay well:)
Introduction
Have you ever been sick? Have you ever had no idea where to get help?
It can be a huge puzzle and when you are sick finding the right answers and the
right direction in which to head can be a huge and daunting task.
So, what is the right answer? And how do you find it. Well, the answer depends on what is wrong and
also differs from person to person. This
book takes a holistic look at the health care system and what you can do as a
patient to make sure you get the right answers and the care you deserve that
matches your needs and requirements.
Whether you are young and healthy and never
been sick a day in your life but worried about what to do if you ever did, or
you are older with some minor ailments or you have a live threatening condition
you can find what you need to learn.
The medical world can feel like a
minefield. The human body is extremely
complicated and even the smartest of doctors cannot understand everything. Far from it, in fact. So how is someone with no experience in
medicine supposed to figure it out?
Well, the answer is actually much more simple than you think. A little bit of time, following the
guidelines in this book and using a few techniques or tricks if you will you
can make sure you get the right care and best possible outcome for you.
And why do I say for you? Well everyone is different and what maybe the
right treatment option for one person may not be right for you. We are all different and there are many
factors that may influence the healthcare option that is best for you. And there is only one person who can make
those decisions. You. You know you best and you are the best person
to make the choices that are right for you.
The other part of this book will be how you
can make sure that you treatment option is executed as well as possible. We always hear on the news or current affairs
shows about medical malpractice or where things have gone wrong and the onus is
always on the healthcare system or hospitals to make sure that it does not
happen again. Well how is this for an
idea? As the patient can use techniques
and put in measures to make sure it doesn’t happen to you. After all, it is your body, your health and
your life. Don’t you owe it to yourself
to make sure everything goes smoothly?
So why am I writing this? I have friends that have needed to have
medical treatment or surgery from time to time and they have asked me for
advice. I am happy to talk to anyone about
what I have learnt and any advice I can share that will help can only be a good
thing. However, others seem to think
that I may be a little offended by the line of questions. Nothing could be further from the truth, but
I figured that if I put what I have learnt in a book it would achieve two
things. First, people would be able to
share in my knowledge without risking offending me and if I had a formal
communication of what I have learnt, people would be more receptive to asking
me directly.
I also found that nobody had written a book
like this. I thought about finding a
book that I could recommend to friends and fellow patients to help them achieve
the best possible outcome from any medical intervention. And, I couldn’t find one, so I thought I’d
write one. This would definitely mean
that I would be able to 100% back the book I would recommend. Now there are plenty of books out there to
help people that have suffered bad health, but they all seem to assume the
diagnosis has been confirmed. For
example, ‘how to survive cancer’ or ‘the key to losing weight’. Now these books can be great if you know your
diagnosis, but one of the most worrying times is when you do not know your
diagnosis. How do you find the right
answer and how do you know you have found the right answer. This book will help you find those answers.
Monday, August 27, 2012
Time for some fun
Mostly, my blog has recently been biographical in nature, so I was thinking it was time to do something a little fun. I have not been talking much about medical news and advancements but I was inspired a couple of weeks ago by a show I watched on television called "The Prophets of Science Fiction". It peeked my interest as it basically followed the work of some very prominent science fiction writers. Isaac Asimov and his literature on robots, Arthur C Clark talking about the space elevator and Robert Heinlein and his theories on the internet.
So how did it inspire me? Well in keeping with the subject matter of my blog I thought I'd have a go at propheteering some advancements in the field of medicine. After all, through my own health problems and doing research for this blog I have found that ideas swimming around in my head about what one day might be possible.
I also think it is important for people to use their imagination. As Albert Einstein said "Imagination is more important than knowledge". I also disagree with necessity being the mother of invention. It is sometimes true but not always. When the Wright brothers built the first aeroplane the didn't do it out of necessity they did it because they wanted to. Seriously there was not much practical application for that plane made out of plywood and old motorcycle parts but they built it anyway and now it is one of the most famous machines ever built.
So if we do not proceed we do not move forward and even the most outlandish ideas may sometime become fact. I mean some people said man would never fly, we would never break the sound barrier, we will never make it into space, it is impossible to fly to the moon. Need I say more?
I think that probably the best example we have working at the moment is the space elevator. Arthur C Clark prophesied this contraption which basically consists of a 100,000km rope anchored to the ground and used to lift cargo into space. The rope is kept taught and upright by the centrifugal force created by the rotation of the earth. Now will it ever be built? Personally I think so. Arthur C Clarke was once asked the same question and he said it would be built 50 years after everyone stops laughing. Well I think the scientific community has stopped laughing. The science is sound and there are people out there conceptualising how it would work. So fifty years from now I hope I am around to see it.
Anyway I thought that I, Andrew Price in my supreme clairvoyant wisdom would throw this prophetic exercise upon the science of medicine and see where it takes me. I have some ideas and I hope to develop them. But medicine needs to challenge its advancement as does all science. An incurable disease in only incurable until someone has figured out a way to cure it. And if we get stuck with traditional thinking we will have our heads buried so deeply in the sand that we will fail to see any advancement.
A good example is with heart stem cells. Conventional thinking is that it is impossible to grow new heart muscle. Well, it has been done yet there are still experts who refuse to acknowledge the breakthrough. And sure, it is only in trial stages but if I had a cardiac problem I would be busting a gut to get in on the trial. Click here to see what I wrote about earlier.
So from time to time, in among the updates etc I will post my premonitions. Alas, I am not a fortune teller, I will be relying on science and logical progression to point me in the right direction. Until next time, stay well:)
So how did it inspire me? Well in keeping with the subject matter of my blog I thought I'd have a go at propheteering some advancements in the field of medicine. After all, through my own health problems and doing research for this blog I have found that ideas swimming around in my head about what one day might be possible.
I also think it is important for people to use their imagination. As Albert Einstein said "Imagination is more important than knowledge". I also disagree with necessity being the mother of invention. It is sometimes true but not always. When the Wright brothers built the first aeroplane the didn't do it out of necessity they did it because they wanted to. Seriously there was not much practical application for that plane made out of plywood and old motorcycle parts but they built it anyway and now it is one of the most famous machines ever built.
So if we do not proceed we do not move forward and even the most outlandish ideas may sometime become fact. I mean some people said man would never fly, we would never break the sound barrier, we will never make it into space, it is impossible to fly to the moon. Need I say more?
I think that probably the best example we have working at the moment is the space elevator. Arthur C Clark prophesied this contraption which basically consists of a 100,000km rope anchored to the ground and used to lift cargo into space. The rope is kept taught and upright by the centrifugal force created by the rotation of the earth. Now will it ever be built? Personally I think so. Arthur C Clarke was once asked the same question and he said it would be built 50 years after everyone stops laughing. Well I think the scientific community has stopped laughing. The science is sound and there are people out there conceptualising how it would work. So fifty years from now I hope I am around to see it.
Anyway I thought that I, Andrew Price in my supreme clairvoyant wisdom would throw this prophetic exercise upon the science of medicine and see where it takes me. I have some ideas and I hope to develop them. But medicine needs to challenge its advancement as does all science. An incurable disease in only incurable until someone has figured out a way to cure it. And if we get stuck with traditional thinking we will have our heads buried so deeply in the sand that we will fail to see any advancement.
A good example is with heart stem cells. Conventional thinking is that it is impossible to grow new heart muscle. Well, it has been done yet there are still experts who refuse to acknowledge the breakthrough. And sure, it is only in trial stages but if I had a cardiac problem I would be busting a gut to get in on the trial. Click here to see what I wrote about earlier.
So from time to time, in among the updates etc I will post my premonitions. Alas, I am not a fortune teller, I will be relying on science and logical progression to point me in the right direction. Until next time, stay well:)
Wednesday, August 22, 2012
Tuesday, August 21, 2012
Wednesday, August 15, 2012
Choices
I was reading on Facebook recently about a person that was considering the same procedure (HSCT) I did. However, where as I was fully supported in this decision by my close family and friends, this person in question was not supported.
Now it wouldn't take a rocket scientist to figure out which side of the fence I sit on. Family support with something like this is critical. If you do not have it, it simply adds another stress to what is already a remarkably stressful time. I believe that a negative reaction is own from ignorance.
Don't get me wrong, I do believe that family members do want the best for their loved ones, but they hear words like "stem cell transplant", "experimental" or "medical trial" and they instantly think the worst. Now there is a risk with the procedure. But, normally there is a risk with anything. Driving a car, catching a plane, people have even died going to the toilet. But that is really irrelevant and not the point I am trying to make.
Or is it? You can't not go to the toilet, it is something that has to be done. Now this choice, the one I made has one more variable and it is only a little bit more complicated than to have or not to have it. The choice is to risk a dangerous procedure in an attempt to reverse the devastating effects of a crippling disease or attempt to live with the disease and the risks of all the conventional treatments that go with it.
Wow, when you look at it like that the scales look a lot more balanced. I think that some people look at it like a game of chicken where the worst that can happen is you end up dead and the best result is to carry on as normal. In this case there is risk associated with both choices, but one at the very least carries the benefit of potentially reversing the progress of your disease.
So next time you know someone that you believe is making a needless and risky decision. Take a second to think about it and do a little research. Your opinion cannot be ignored if it is educated and informed. And maybe, you might just think a little differently about it. Until next time, stay well:)
Now it wouldn't take a rocket scientist to figure out which side of the fence I sit on. Family support with something like this is critical. If you do not have it, it simply adds another stress to what is already a remarkably stressful time. I believe that a negative reaction is own from ignorance.
Don't get me wrong, I do believe that family members do want the best for their loved ones, but they hear words like "stem cell transplant", "experimental" or "medical trial" and they instantly think the worst. Now there is a risk with the procedure. But, normally there is a risk with anything. Driving a car, catching a plane, people have even died going to the toilet. But that is really irrelevant and not the point I am trying to make.
Or is it? You can't not go to the toilet, it is something that has to be done. Now this choice, the one I made has one more variable and it is only a little bit more complicated than to have or not to have it. The choice is to risk a dangerous procedure in an attempt to reverse the devastating effects of a crippling disease or attempt to live with the disease and the risks of all the conventional treatments that go with it.
Wow, when you look at it like that the scales look a lot more balanced. I think that some people look at it like a game of chicken where the worst that can happen is you end up dead and the best result is to carry on as normal. In this case there is risk associated with both choices, but one at the very least carries the benefit of potentially reversing the progress of your disease.
So next time you know someone that you believe is making a needless and risky decision. Take a second to think about it and do a little research. Your opinion cannot be ignored if it is educated and informed. And maybe, you might just think a little differently about it. Until next time, stay well:)
Monday, July 30, 2012
My HSCT update
When I started this journey I was posting everyday. Then it turned to every week, then every other week and now I honestly think it is not worth keeping it going unless there is something significant to blog about. Don't worry, I will still be blogging just not about my HSCT. This will be the last one for a while.
So yada yada yada, cut a long story short, feeling fine, blood work good, things are getting back to normal and the procedure is working great! In case you didn't see my video you can check it out right here:
http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html
I guess the biggest thing that has happened is I am experiencing a whole new type of soreness. Funnily enough it is a good pain. Muscles that have laid dormant to wither and atrophy for the last ten years have started to reawaken, hence why I am able to run again. But with the exercise comes soreness and stiffness that I haven't experienced in many years. My physio has had to change his approach with me as my body readjusts to the new nerve connections.
But that is great. It means I am getting better and I will take that any day. Until next time, stay well:)
So yada yada yada, cut a long story short, feeling fine, blood work good, things are getting back to normal and the procedure is working great! In case you didn't see my video you can check it out right here:
http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html
I guess the biggest thing that has happened is I am experiencing a whole new type of soreness. Funnily enough it is a good pain. Muscles that have laid dormant to wither and atrophy for the last ten years have started to reawaken, hence why I am able to run again. But with the exercise comes soreness and stiffness that I haven't experienced in many years. My physio has had to change his approach with me as my body readjusts to the new nerve connections.
But that is great. It means I am getting better and I will take that any day. Until next time, stay well:)
Thursday, July 26, 2012
Myeloablative vs Non-Myeloablative
Myeloablative (MB) vs Non-Myeloablative (NMB)? If you are considering HSCT this is a question you will probably end up contemplating. There are supporters of both. Dr Richard Burt from North Western Hospital prefers the NMB protocol whereas others like HSCT recipient George Goss advocate for the MB.
The question is who is right and why? Personally I believe that there is a room for both. And here is why. To start I would just like to add that the theories and points I'm laying out in this post are my own and have not been ratified by any research or medically qualified people. But it does make sense. Well to me anyway.
The MB procedure is where the entire bone marrow is attacked by the chemotherapy regime. This destroys all blood producing cells. The NMB targets the white cells and does not completely destroy the bone marrow. The theory being that the fault with the immune system lies in the white cells and destroying them will destroy the immune problem too. The MB in destroying the bone marrow also destroys the white blood cells and the immune system.
To begin with I'm going to do a short list of the pros and cons of each procedure.
MB Pros
The question is who is right and why? Personally I believe that there is a room for both. And here is why. To start I would just like to add that the theories and points I'm laying out in this post are my own and have not been ratified by any research or medically qualified people. But it does make sense. Well to me anyway.
The MB procedure is where the entire bone marrow is attacked by the chemotherapy regime. This destroys all blood producing cells. The NMB targets the white cells and does not completely destroy the bone marrow. The theory being that the fault with the immune system lies in the white cells and destroying them will destroy the immune problem too. The MB in destroying the bone marrow also destroys the white blood cells and the immune system.
To begin with I'm going to do a short list of the pros and cons of each procedure.
MB Pros
- Destroying the bone marrow will completely destroy the immune system. It is much more thorough.
- It has been successful in treating auto immune diseases.
MB Cons
- The chemo treatment is much more severe and intense
- There is an increased risk of complications
- Recovery is longer
NMB Pros
- It is less invasive than the MB protocol
- It has been successful in treating auto immune diseases.
NMB Cons
- It is not as successful as the MB
I will give you two examples. First, my favourite subject, Me! I had the NMB and it worked for me really well and I'm not the only one. But when you look at diseases such as multiple sclerosis, the selection criteria is much more strict for the North Western NMB protocol. It is their understanding that once your EDSS score (A score out of 10 to that measures degree of disability) is greater than 6, HSCT is ineffective.
That brings me onto my second example. Carmel Turner had MS and her EDSS was 7 which would have rendered her ineligible for the North Western trial. She had the MB HSCT using the BEAM protocol and just like mine worked for me, hers worked for her.
That brings me onto attempting to answer the question of which protocol for you if you are considering HSCT for an autoimmune disease. Now bear with me here, this is the point where I'm creating my own hypotheses. I have no scientific data to back these up. But I believe there are a number of factors that one should consider:
- Severity of disease. If your disease is severely debilitating a stronger approach may be considered.
- Longevity of disease. The longer you have had a disease the more entrenched it will become in your body and the stronger the treatment may need to be.
- Type of disease. I believe that if the disease is predominantly inflammatory in nature then the NMB protocol will work. If the diseases has progressed beyond an inflammatory stage a stronger regime will probably be required
I would love to see a medical researcher test these hypotheses to see if I'm right and if I'm not, are there any discernible patterns? Believe me the NMB was bad enough. You wouldn't want to go through the MB protocol unless you had to. Well, I hope that this does inspire some educated discussion. Until next time, stay well:)
Monday, July 23, 2012
How did I do it?
First I just want to say that the amount of positive feedback I got on my last video post was amazing. Among all the feedback was a question about how did I do it? It is a great question because it is not nearly as simple as filling out a form and sending it in. The whole process from learning about the treatment to my transplant date was about nine months.
Firstly, I think it is important to acknowledge the work of Dr Burt and his team. Without his 20+ years of research this treatment probably wouldn't be available for patients with CIDP. Fortunately for me it is, and I benefitted significantly from this and also all the people who went through the procedure before me.
But where did I start? I first learnt about the procedure on an online forum for CIDP in July 2011. I was extremely enthusiastic about the treatment, but at the same time very cautious. In a way I was almost sceptical. I think this is a great attitude to have because there are many people selling nothing more than hope in empty barrels, especially when using a buzz word like 'stem cells'.
So I started research. I looked at the process and the theory behind the procedure. To me it made perfect sense so I moved onto checking the study to make sure it had been approved by the proper health authorities and ethics committees and complied with safety guidelines. Lastly, I checked the hospital, Dr Burt and the division of immunotherapy (DIAD). On all counts I was thoroughly impressed so I now had a bee in my bonnet. I wanted this done! I encourage everyone to do their own research. This is a super critical point that I believe everyone should do to benefit themselves. You are not doing it for anyone else, so you have to be comfortable about what you are signing up for. I really think that this is such an important step. I read the results received from other autoimmune diseases and spoke to other CIDPers who had been through the process. I plan to devote a section of my book to this topic when I finally have it finished it.
My next step was to contact DIAD to see if I would qualify for the trial. They had a list of requests as long as your arm which was fair enough. Medical history, CIDP history, medications etc... To get all this I had to talk to my doctor who was not nearly as enthusiastic so getting all this info would be tricky, so I got my GP to request all the files and then I sent them to Chicago. I was annoyed at the very cold reply from my neurologist because I had done my research, I had talked to a lot of people about it and nothing was going to stop me from being the master of my own destiny.
DIAD website
When they received the data they had two more requests. First, they wanted me to get some tests done and second, they wanted to know I could pay. All up the cost was about $135,000, not including travel, accommodation and other living expenses. There are a variety of options to get the money. US residents can orally get insurance to pay for a large portion of it, but living OS I had to front up 100% of the cash. Luckily for me I was able to do that.
After they received my results the asked me to come to Chicago for more tests and hopefully a transplant. I was booked in and given a timeline. I had to arrange all my own transport, accommodation etc, but it was worth it. Until next time, stay well:)
Firstly, I think it is important to acknowledge the work of Dr Burt and his team. Without his 20+ years of research this treatment probably wouldn't be available for patients with CIDP. Fortunately for me it is, and I benefitted significantly from this and also all the people who went through the procedure before me.
But where did I start? I first learnt about the procedure on an online forum for CIDP in July 2011. I was extremely enthusiastic about the treatment, but at the same time very cautious. In a way I was almost sceptical. I think this is a great attitude to have because there are many people selling nothing more than hope in empty barrels, especially when using a buzz word like 'stem cells'.
So I started research. I looked at the process and the theory behind the procedure. To me it made perfect sense so I moved onto checking the study to make sure it had been approved by the proper health authorities and ethics committees and complied with safety guidelines. Lastly, I checked the hospital, Dr Burt and the division of immunotherapy (DIAD). On all counts I was thoroughly impressed so I now had a bee in my bonnet. I wanted this done! I encourage everyone to do their own research. This is a super critical point that I believe everyone should do to benefit themselves. You are not doing it for anyone else, so you have to be comfortable about what you are signing up for. I really think that this is such an important step. I read the results received from other autoimmune diseases and spoke to other CIDPers who had been through the process. I plan to devote a section of my book to this topic when I finally have it finished it.
My next step was to contact DIAD to see if I would qualify for the trial. They had a list of requests as long as your arm which was fair enough. Medical history, CIDP history, medications etc... To get all this I had to talk to my doctor who was not nearly as enthusiastic so getting all this info would be tricky, so I got my GP to request all the files and then I sent them to Chicago. I was annoyed at the very cold reply from my neurologist because I had done my research, I had talked to a lot of people about it and nothing was going to stop me from being the master of my own destiny.
DIAD website
When they received the data they had two more requests. First, they wanted me to get some tests done and second, they wanted to know I could pay. All up the cost was about $135,000, not including travel, accommodation and other living expenses. There are a variety of options to get the money. US residents can orally get insurance to pay for a large portion of it, but living OS I had to front up 100% of the cash. Luckily for me I was able to do that.
After they received my results the asked me to come to Chicago for more tests and hopefully a transplant. I was booked in and given a timeline. I had to arrange all my own transport, accommodation etc, but it was worth it. Until next time, stay well:)
Saturday, July 21, 2012
My video
Thanks everyone who has watched or commented on my video. I really appreciate it. Some have asked if they could use it on their website or in social media. Please be my guest. It is there to share:) If it makes it any easier you can view it directly on youtube:
http://www.youtube.com/watch?v=18-HW1A_18g&feature=plcp
I hope that people can gain hope and inspiration from this and others with autoimmune diseases can look at what I did as a realistic treatment option. In fact, if it going to help people, I encourage you all to share it. Stay well:)
Ps. If you want to buy Cory Smallegan's cover of 'Closer', it is available from the iTunes store.
http://www.youtube.com/watch?v=18-HW1A_18g&feature=plcp
I hope that people can gain hope and inspiration from this and others with autoimmune diseases can look at what I did as a realistic treatment option. In fact, if it going to help people, I encourage you all to share it. Stay well:)
Ps. If you want to buy Cory Smallegan's cover of 'Closer', it is available from the iTunes store.
Friday, July 20, 2012
Tuesday, July 17, 2012
Week 12 and 13
Yes, I know I haven't written for a while. But that isn't quite true. My big news is that I have decided to write a book. It is about health and I have started so stay tuned. I will divulge more later but as most of my readers are people with health issues I would like to call on your help. Not yet, but soon I will be graciously calling on you all to help.
It has also been school holidays so I have been busy with the kids but these are just excuses as I decided recently to dust off my Nintendo 64 and fired up Zelda: Ocarina of time, which is my favourite game ever (and probably the main reason for my lack of writing) but in the interests of professionalism I'm going with the first two excuses.
So, how am I doing? Really well actually. Everything seems to be on track. My blood work was fine with the exception of my kidney function which was elevated. The haematologist I am seeing here was concerned but seeing as I have a kidney problem too I also have a nephrologist who we consulted over this issue.
So what caused this elevation? During my HSCT I had really low blood pressure so the doctors at North Western decided I should stop taking Captopril, a drug I take for kidney stone prevention. I started taking the drug a couple of weeks ago and this is the reason for the elevated creatinine. Apparently it does not damage the kidneys, just slows them up a little.
As my neurologist was not overly concerned, neither am I. But one think that remains in the question of whether the treatment worked? Stay tuned, I will blog about that later this week. Until then, stay well:)
It has also been school holidays so I have been busy with the kids but these are just excuses as I decided recently to dust off my Nintendo 64 and fired up Zelda: Ocarina of time, which is my favourite game ever (and probably the main reason for my lack of writing) but in the interests of professionalism I'm going with the first two excuses.
So, how am I doing? Really well actually. Everything seems to be on track. My blood work was fine with the exception of my kidney function which was elevated. The haematologist I am seeing here was concerned but seeing as I have a kidney problem too I also have a nephrologist who we consulted over this issue.
So what caused this elevation? During my HSCT I had really low blood pressure so the doctors at North Western decided I should stop taking Captopril, a drug I take for kidney stone prevention. I started taking the drug a couple of weeks ago and this is the reason for the elevated creatinine. Apparently it does not damage the kidneys, just slows them up a little.
As my neurologist was not overly concerned, neither am I. But one think that remains in the question of whether the treatment worked? Stay tuned, I will blog about that later this week. Until then, stay well:)
Tuesday, July 3, 2012
Thank You
Many people have sent me their congratulations about the treatment that I received in Chicago and also told me how strong and tenacious I've been. Personally I appreciate the accolades but I don't see it. I feel I have just done what I had to do to beat my disease. Because, let's face it, it's much easier to live without a disease than with it. So that being said maybe I took the easier option?
Anyway, whatever you want to call it, the truth is I could not have done it alone. So I have decided to give everyone who helped a long overdue thank you. There are many people so the question is where do I start? I will also apologise now if I forget anyone. So here goes.....
First, my medical team here in Australia that assisted me in getting everything ready to take to Chicago. There was a lot of preparatory work to do and I could not have done it all by myself.
My friends and family here in Australia who supported me before I left and helped keep my affairs in order and look after the kids while I was away. Especially the in-laws.
To all my friends in Chicago and the US (both old and new) who made my trip not just a little less lonely, but a lot less lonely.
The medical team in Chicago. From doctor Burt all the way down to the PCP's on the 19th floor. The care was fantastic.
To all my online friends that have wished me well and followed my blog, I have to say I have gained a world of strength knowing I have had so many in my corner.
Bob, Wendy and Cory who went through the process at the same time I did. Although I would not wish CIDP on anyone or see them need a stem cell transplant, it is nice to know you're not alone.
To my parents, without who's financial assistance none of this would have been possible.
My mother, who also spent a good deal of time with me whilst I was in hospital.
Lastly to my wife who also spent a good deal of time with me in Chicago and also put up with me during my recovery.
Stay well:)
Anyway, whatever you want to call it, the truth is I could not have done it alone. So I have decided to give everyone who helped a long overdue thank you. There are many people so the question is where do I start? I will also apologise now if I forget anyone. So here goes.....
First, my medical team here in Australia that assisted me in getting everything ready to take to Chicago. There was a lot of preparatory work to do and I could not have done it all by myself.
My friends and family here in Australia who supported me before I left and helped keep my affairs in order and look after the kids while I was away. Especially the in-laws.
To all my friends in Chicago and the US (both old and new) who made my trip not just a little less lonely, but a lot less lonely.
The medical team in Chicago. From doctor Burt all the way down to the PCP's on the 19th floor. The care was fantastic.
To all my online friends that have wished me well and followed my blog, I have to say I have gained a world of strength knowing I have had so many in my corner.
Bob, Wendy and Cory who went through the process at the same time I did. Although I would not wish CIDP on anyone or see them need a stem cell transplant, it is nice to know you're not alone.
To my parents, without who's financial assistance none of this would have been possible.
My mother, who also spent a good deal of time with me whilst I was in hospital.
Lastly to my wife who also spent a good deal of time with me in Chicago and also put up with me during my recovery.
Stay well:)
Saturday, June 30, 2012
Weeks 10 and 11
I think it is safe to say that I am pretty much fully recovered from the effects of the transplant. There is nothing that I was doing before transplant that I am not doing now, with the exception of swimming as I have been instructed to stay out of public swimming pools for a little while yet. Although my blood work is looking pretty good I still have to be careful as my immune system will not yet be up to scratch. The restrictions and prophylactic medications will last up to twelve months.
Saying that my blood work looked good as well is not quite accurate either. While most of it looked good, my kidney function was just a little off. Kidney function is measured by creatinine. The maximum range should be 120 but mine is currently 125. No immediate cause for concern but still needs to be further investigated.
My haematologist, Prof Prince, seems to think that it is because of the captopril I take for my kidney stones. I stopped taking it during my stem cell transplant as my blood pressure was very low, but I started taking it again a couple of weeks ago on the advice of my nephrologist. Prof Prince has suggested that I talk to my nephrologist about it. I have already put the call in but I am yet to hear back. I will keep you all posted.
Another interesting thing that has happened is to do with my finger nails. I have noticed that I have a pail band across each nail on both hands and feet. I can only assume that it is from the chemo and that my nail development during this time was altered. It doesn't hurt, nor is it uncomfortable. I just found it interesting. And to Bob, Wendy and Cory my fellow transplant buddies. I bet if you're reading this you just looked at your finger nails. Scratch that, I bet everyone reading this did;) Until next time, stay well:)
Saying that my blood work looked good as well is not quite accurate either. While most of it looked good, my kidney function was just a little off. Kidney function is measured by creatinine. The maximum range should be 120 but mine is currently 125. No immediate cause for concern but still needs to be further investigated.
My haematologist, Prof Prince, seems to think that it is because of the captopril I take for my kidney stones. I stopped taking it during my stem cell transplant as my blood pressure was very low, but I started taking it again a couple of weeks ago on the advice of my nephrologist. Prof Prince has suggested that I talk to my nephrologist about it. I have already put the call in but I am yet to hear back. I will keep you all posted.
Another interesting thing that has happened is to do with my finger nails. I have noticed that I have a pail band across each nail on both hands and feet. I can only assume that it is from the chemo and that my nail development during this time was altered. It doesn't hurt, nor is it uncomfortable. I just found it interesting. And to Bob, Wendy and Cory my fellow transplant buddies. I bet if you're reading this you just looked at your finger nails. Scratch that, I bet everyone reading this did;) Until next time, stay well:)
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