If you are Australian and you don't live under a rock, you will have heard that we have a new change of leadership. Julia Gillard was ousted in a very similar fashion to the way in which she took the job three years ago and in an ironic twist of fate the person that deposed her was the same person she deposed last time. If you are one of my readers from overseas I can tell you that yes, it is as farcical as it sounds.
And I for one say 'Good riddance Ms Gillard'. You have lied, cheated and done dodgy deals to stay in power (the same fashion in which you took it) and hopefully the country can now right itself. Most of your policies have been pure pandering to minorities and non essential institutions in order to keep your job and when anybody attacked you you simply branded them a sexist misogynist which in most cases wasn't true, simply a way to deflect attention. I for one have judged you as a politician and prime minister, not a woman.
But I digress. This is a blog is about medical issues not a mechanism for me to vent my political frustrations so let me marry the two together. For all her shortcomings Julia Gillard has one policy that I believe is the shining light of her term in office. A policy that is as forward thinking and progressive as when Thomas Price (former Premier of South Australia and also my great great grandfather) gave women the right to vote in state elections in 1906. I am of course referring to the National Disability Insurance Scheme (NDIS).
As a society we need to keep evolving and our social responsibility should forever be increasing. Years ago every developed society developed their own health care system to look after the sick. However, this was set up to nurse the sick and stop people from dying. This initiative goes one step further and is aimed squarely at giving the chronically sick and disabled an improved quality of life through providing living and mobility aids, case working, carers assistance etc...
I believe this policy will set a benchmark for other developed countries to follow. And don't confuse this with socialism, this is social responsibility and although it is expensive and paid for by the tax payer it is the right thing to do. Some of these disabled people will even become more functional and become tax payers themselves which would ease the financial burden. But this is not why we are doing this. For people to have self esteem they need to feel like they are productive and and contributing members of society. The NDIS will act as a vehicle for this.
For this reason Ms Gillard, as you pack your bags and vacate the Lodge I salute you. However, I also send a message out to Kevin Rudd and all future leaders of our country. This is just the beginning. The journey which has now been started has a long way to travel. Make sure you reach the destination. If you need a hand I'll be happy to help:)
Stay well:)
Thursday, June 27, 2013
Friday, June 21, 2013
The proof is in the..... Nerve conduction Studies
I have been sitting on these for a while and I apologise for not getting them out to you sooner. They are my nerve conduction study test results which are the most significant tests available for the diagnosis of CIDP. I do apologise because they are extremely hard to read. Functional graphic design took one look at medicine then hitched a ride on the Saturn V into space and never returned.
The results are very confusing even for me but I think that the most telling test is the sensory nerves where in the pre-transplant test they couldn't even find a sensory nerve and in the post they could. Also in the comments at the end the neurologist, Dr Allen, comments on improvement. And that was only five months later!
Stay well:)
The results are very confusing even for me but I think that the most telling test is the sensory nerves where in the pre-transplant test they couldn't even find a sensory nerve and in the post they could. Also in the comments at the end the neurologist, Dr Allen, comments on improvement. And that was only five months later!
Stay well:)
Tuesday, June 18, 2013
What can stop you dead in your tracks?
Ok, I know, there are plenty of answers. An anvil on the head road runner style could do it, but let's be a little serious. What is orange, about five millimetres long and can stop you in you tracks?
If you are one of my fellow cystinuria friends you probably guessed it after reading the title. If not and you're still struggling with the answer here is a picture of it.
If you are one of my fellow cystinuria friends you probably guessed it after reading the title. If not and you're still struggling with the answer here is a picture of it.
Yes, if you haven't guessed already it is a kidney stone. And although small and insignificant by size can cause a hell of a lot of pain and grief. Basically, they grow in the kidney through a process of crystallisation. Occasionally they fall out and cause a blockage arresting the natural flow of urine from the kidney to the bladder. This causes pressure in the kidney which leads to excruciating pain.
Eventually the stone passes into the bladder and then out into the open air during urination. A question I get a lot is does that hurt. Really, not nearly as much as when it blocks the kidney, if at all. But the pain whilst the stone blocks the kidney is debilitating. It can stop you dead in your tracks. I have felt really quite productive this year too. But a kidney stone will put a stop to that. After I dosed myself up on pain killers I felt capable of nothing accept keeping my spot on the couch warm.
I think I have been lucky though. Ever since my kidney op in April I have been passing a small stone every two to three weeks which is probably just residuals from the procedure but they have not caused me any problems. I guess my luck just ran out. The important thing is that I'm all better now. Stay well:)
Thursday, June 13, 2013
What to expect when you're expecting........ HSCT
Now if you have the time and the inclination you could pretty much get all the information you need from reading my previous posts from last year. But given that most people are time poor and don't want to plough through the best part of a hundred posts I thought I'd condense it into one little post for you all to read.
Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT. It is by no means generic and don't think that if you have HSCT your experience will be exactly the same. Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.
So where do I start. Well the beginning would be logical. I contracted CIDP in 2000. It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease. I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.
It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression. It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke." There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting. Really really badly.
Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life. This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders. It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful. However, I always new 2006 was my low point and it still hung over me like the sword of Damocles. I still had CIDP and I still had cystinuria.
I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt. In his blog he wrote that Crohn's disease was an autoimmune disease. I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?" After all, CIDP is an inflammatory autoimmune disease too.
And what do you know, Dr Burt had a trial for CIDP too. I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one. I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through. In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.
Now people have called me mad, stupid, brave and strong to have had this done. I disagree with all of it. I honestly thought I didn't have a choice. Without the treatment my future didn't hold much for me. A wheel chair? palliative care? Loss of bowel and bladder control? Death? And living half a life in-between? I did not feel brave or strong I felt like I was left with only one option. Mad and stupid too? I did my research. I read the published studies and I talked to the transplant recipients who had gone before me. Everything made sense. If you had asked me I think I would have been mad not to have had it done.
So off I went to Chicago. Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial. Fortunately I was. The other worrying thought I had was what if it didn't work. I eventually reconciled this by telling myself that if I tried it and failed at least I would know. If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years. Just slowly watching myself get worse.
Strangely enough I knew that the procedure was going to be tough but that didn't bother me. I was focussed on the goal and that kept me going. I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself. I did know what I was getting myself in to.
My Chicago trip was really in two halves. The first half was all testing and appointments in the morning and the rest of the day to do as I pleased. I can't lie, it was fun although I did miss my family. I even managed to squeeze a trip into Washington DC to see some friends which was great fun. But the second half was the serious side.
I survived the mobilisation process quite well. The first round of chemo didn't hit me too hard. I was slightly off my food but I did not feel nauseous. However I did have a craving for chocolate milkshakes but others might just say that was normal for me. The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.
Finally conditioning came around. After five days of chemo it was safe to say I felt awful. Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had. Even with all the anti nausea drugs I still felt terrible. This link to one of my posts will give you a snapshot of just how bad I felt.
http://shakesandstones.blogspot.com.au/2012/04/day-7_18.html
Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home. It was a really hard flight. Even in business I felt restless and unwell. If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic. When I arrived back in Melbourne I could barely walk I was so tired.
After a month of rest and recuperation I started to feel like myself again. Since then the progress has been slow and steady but undeniable. In hindsight I am so glad I did it. Finally I not only found a treatment that halted disease progression completely but sent it back the other way. Since then I have been able to run, play cricket and go skiing. But the best part is the little things. I used to have to crawl to the bathroom in the middle of the night when I needed to go. I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.
To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease. As for me now, I have my life back. I can look forward with confidence, not worry. The glass used to be half empty, now it is half full. Don't believe me check out my video.
http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html
Stay well:)
Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT. It is by no means generic and don't think that if you have HSCT your experience will be exactly the same. Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.
So where do I start. Well the beginning would be logical. I contracted CIDP in 2000. It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease. I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.
It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression. It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke." There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting. Really really badly.
Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life. This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders. It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful. However, I always new 2006 was my low point and it still hung over me like the sword of Damocles. I still had CIDP and I still had cystinuria.
I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt. In his blog he wrote that Crohn's disease was an autoimmune disease. I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?" After all, CIDP is an inflammatory autoimmune disease too.
And what do you know, Dr Burt had a trial for CIDP too. I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one. I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through. In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.
Now people have called me mad, stupid, brave and strong to have had this done. I disagree with all of it. I honestly thought I didn't have a choice. Without the treatment my future didn't hold much for me. A wheel chair? palliative care? Loss of bowel and bladder control? Death? And living half a life in-between? I did not feel brave or strong I felt like I was left with only one option. Mad and stupid too? I did my research. I read the published studies and I talked to the transplant recipients who had gone before me. Everything made sense. If you had asked me I think I would have been mad not to have had it done.
So off I went to Chicago. Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial. Fortunately I was. The other worrying thought I had was what if it didn't work. I eventually reconciled this by telling myself that if I tried it and failed at least I would know. If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years. Just slowly watching myself get worse.
Strangely enough I knew that the procedure was going to be tough but that didn't bother me. I was focussed on the goal and that kept me going. I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself. I did know what I was getting myself in to.
My Chicago trip was really in two halves. The first half was all testing and appointments in the morning and the rest of the day to do as I pleased. I can't lie, it was fun although I did miss my family. I even managed to squeeze a trip into Washington DC to see some friends which was great fun. But the second half was the serious side.
I survived the mobilisation process quite well. The first round of chemo didn't hit me too hard. I was slightly off my food but I did not feel nauseous. However I did have a craving for chocolate milkshakes but others might just say that was normal for me. The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.
Finally conditioning came around. After five days of chemo it was safe to say I felt awful. Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had. Even with all the anti nausea drugs I still felt terrible. This link to one of my posts will give you a snapshot of just how bad I felt.
http://shakesandstones.blogspot.com.au/2012/04/day-7_18.html
Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home. It was a really hard flight. Even in business I felt restless and unwell. If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic. When I arrived back in Melbourne I could barely walk I was so tired.
After a month of rest and recuperation I started to feel like myself again. Since then the progress has been slow and steady but undeniable. In hindsight I am so glad I did it. Finally I not only found a treatment that halted disease progression completely but sent it back the other way. Since then I have been able to run, play cricket and go skiing. But the best part is the little things. I used to have to crawl to the bathroom in the middle of the night when I needed to go. I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.
To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease. As for me now, I have my life back. I can look forward with confidence, not worry. The glass used to be half empty, now it is half full. Don't believe me check out my video.
http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html
Stay well:)
Tuesday, June 11, 2013
Moving Mountains
Hi peeps,
You all have to read this story and then go to the link in the post and show your disappointment. No matter what country you live in, it all helps. They were going to interview me as part of their story but I guess that isn't happening any more:( It is a hugely important message and every message on the website counts.
http://www.movingmountains2013.com/could-two-minutes-potentially-change-someones-life/
Stay well:)
You all have to read this story and then go to the link in the post and show your disappointment. No matter what country you live in, it all helps. They were going to interview me as part of their story but I guess that isn't happening any more:( It is a hugely important message and every message on the website counts.
http://www.movingmountains2013.com/could-two-minutes-potentially-change-someones-life/
Stay well:)
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