For those of you that don't know, I have had two main medical issues throughout my life. CIDP, the problem for which I was successfully treated with HSCT back in 2012 and cystinuria. A disease that means you get lots and lots of kidney stones.
Anyway, a few times I have been asked the question "Did HSCT also work for cystinuria too?" A reasonable question ask but what is the answer?
The short answer is no.
The long answer in no.
Ok, ok that is a little facetious of me so I will elaborate. When I was looking for new treatments for my ailments there were always two voices in my head. First, the cold and logical part of my brain that asks for facts and questions the scientific theory. The second is the voice driven by emotion. A voice that clings to hope and is fuelled by desperation.
The question is, which one to listen to? The answer is both. When I first heard of HSCT I got very excited. I was like a kid in a candy store that had just found the best chocolate bar in the world ever. I then shared this news with my doctors who were much more sceptical. Logic dictated that I should give up now as my doctors knew an awful lot more than I did. But I was right to listen to my emotional side which told me to carry on.
However, I then had to listen to my logical side. Ask myself questions like "What is the medical rationale behind this?" "What have the studies to date proven?" "What has come of the patients before me?" In all three counts the answer was positive so I decided to go ahead and made what was absolutely the right decision.
But what has this to do with cystinuria? The brain was ticking over at the time and I did ask myself "Could this help my cystinuria?" My emotional brain wanted it to but my logical brain new the answer. There was no medical or scientific rationale saying it would work. There was absolutely no reason to think it so no studies had been done and nobody had been before me. But still emotional Andy kept saying "but maybe..." I was going to have the treatment anyway
Unfortunately, logical Andy was right. Since HSCT my CIDP has all but gone but I still have kidney stones. In the last four years I have had six surgeries for stones and I'm sure there will be more to come. So to my fellow cystinurics, unfortunately this is not the answer no matter how much we wish it was but I'd also say don't give up looking. Keep listening to that emotional side that wants to find the answer. There is a better treatment out there, dare I even say cure? And it will take both the logical and emotional voices in our heads to find it.
Stay well:)
Showing posts with label CIDP. Show all posts
Showing posts with label CIDP. Show all posts
Friday, April 22, 2016
Monday, April 18, 2016
Does HSCT work?
Firstly, to all my dedicated readers. Sorry. It has been way too long since I have posted. I'll try to keep you more up to speed in the future.
But can you believe it has been four years since I had my life changing stem cell transplant in Chicago? And yes! I really mean life changing. If I have one regret it is that I don't have much video of me before my transplant so that I can compare it to now, so for the first part of this post I'll describe what I was like.
When I had my first evaluation with Dr Burt in February 2012 he asked me to stand up out of my chair without using my hands. I did it... Just. I had to shimmy along to the end of the chair so my centre of gravity was as directly above my feet as possible and with one mighty heave I pushed up. Instinctively I tried to use my hands but was reminded not to but after about three seconds I was standing in a vertical position.
This was with no weights or hinderances either and I only just managed to achieve it. Fast forward four years and after HSCT and a bit (ok a lot) of gym work I managed this:-
That is an 85 Kg deadlift and three reps to boot! HSCT works people! HSCT works. Stay well:)
But can you believe it has been four years since I had my life changing stem cell transplant in Chicago? And yes! I really mean life changing. If I have one regret it is that I don't have much video of me before my transplant so that I can compare it to now, so for the first part of this post I'll describe what I was like.
When I had my first evaluation with Dr Burt in February 2012 he asked me to stand up out of my chair without using my hands. I did it... Just. I had to shimmy along to the end of the chair so my centre of gravity was as directly above my feet as possible and with one mighty heave I pushed up. Instinctively I tried to use my hands but was reminded not to but after about three seconds I was standing in a vertical position.
This was with no weights or hinderances either and I only just managed to achieve it. Fast forward four years and after HSCT and a bit (ok a lot) of gym work I managed this:-
Friday, August 15, 2014
Follow up wrap
Well it's all done and dusted in Chicago now. A caught up with a couple of people in the ward going through the process at the moment, I had lunch with Brian Hinkle, a fellow CIDP patient who was there for his one year follow up and of course I had my appointments with Dr Allen and Dr Burt. I was there for a week so I also had time to catch up with some old friends, visit some of my favourite places and do a couple of things I wasn't able to do a couple of years ago.
However, although I would have to classify the trip as a success I still feel a little disappointed. Allow me to elaborate. This is my second evaluation. When I had the first one the results were nothing short of spectacular. Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.
In this my second evaluation I was hoping that this steep upward curve would continue to climb. I was expecting improvement albeit not as much but alas, there was none. On the plus side, there was no degradation either. But still, I couldn't help but be a little disappointed. The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it. The improvement plateaued and there it has remained.
It's not all bad though. For the first six months post HSCT I had significant marked improvement. This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.
This actually solves the biggest issue I had prior to HSCT which was the uncertainty. I never knew what the next stage in my disease progression was going to be or when. Now I know what to expect. I can move forward knowing what the future holds.
The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage. Was it all worth it. You Bet! I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.
Until next time, stay well:)
However, although I would have to classify the trip as a success I still feel a little disappointed. Allow me to elaborate. This is my second evaluation. When I had the first one the results were nothing short of spectacular. Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.
In this my second evaluation I was hoping that this steep upward curve would continue to climb. I was expecting improvement albeit not as much but alas, there was none. On the plus side, there was no degradation either. But still, I couldn't help but be a little disappointed. The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it. The improvement plateaued and there it has remained.
It's not all bad though. For the first six months post HSCT I had significant marked improvement. This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.
This actually solves the biggest issue I had prior to HSCT which was the uncertainty. I never knew what the next stage in my disease progression was going to be or when. Now I know what to expect. I can move forward knowing what the future holds.
The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage. Was it all worth it. You Bet! I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.
Until next time, stay well:)
Thursday, July 31, 2014
Back in Chi Town
Can you believe it has been over two years since my transplant? Neither can I. But I'm back in the Windy city for a follow up and I have to say it is fantastic to be back. Chicago is a fantastic city and I have many fond memories. So far I have caught up with many old friends and seen Dr Burt. I got the feeling he is really excited about how far his research has progressed. He didn't tell me as such but I got the feeling that he is soon going to publish or finish some of his studies and will be announcing to the world some magnificent results. But then again I may be wrong.
In terms of my follow up they were amazed at how well I was doing. They had me fill out a bunch of disability scales and all the scores were either 1 or 0. I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.
On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle. It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction. He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.
As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain. And I mean it poured. They turned the rain all the way up to eleven ;) Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter. I also have my NCV and EMG today. I'll keep you posted on how that goes.
Stay well:)
In terms of my follow up they were amazed at how well I was doing. They had me fill out a bunch of disability scales and all the scores were either 1 or 0. I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.
On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle. It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction. He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.
As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain. And I mean it poured. They turned the rain all the way up to eleven ;) Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter. I also have my NCV and EMG today. I'll keep you posted on how that goes.
Stay well:)
Thursday, April 10, 2014
Two years
I am pinching myself. It has now been two years since I was in Chicago having my stem cells infused back into me. Ironically, the day seemed a bit like a non-event. After all the drugs and chemotherapy they put into me over my three week hospital stay the stem cell infusion seemed like just another hospital day.
What is important is the two years since then. My recovery has been better than I ever imagined. For 12 years I was not able to run. Three months after my HSCT I could run again. And the improvements have not stopped there. The best things are I feel like I have become a better husband, father and person. I can play with my kids, I can lift the groceries out of the car and I can walk down stairs without using the handrail.
But even today I noticed something I did that I hadn't been able to do six months ago or for the last 14 years for that fact. Currently I'm holidaying on the Gold Coast with my family and today we were at White Water World. Kids being kids had sprinted to the queue and were (im)patiently waiting by the time I got there. The quickest way for me to get there was to duck under the railing. Six months ago that would have been an effort but as always seems to happen, I ducked under the railing and didn't even realise it until it was over. I then managed to carry up the floaty for my daughter and I by myself!
Anyway the last two years have been two of the best of my life and I'm going to take this opportunity to thank some really special people. First and most importantly my friends and family who have supported me on this journey. It is amazing to see the smiles on their faces when they notice my improvement. A special thanks must go to my wife, my parents and my inlaws. They say that family will always be there for you no matter what and that is so true. To Dr Burt, Amy, Paula and all the other staff at North Western, the care I got was faultless and without your tireless effort I never would have been able to achieve my results. Lastly to my new Reset friends and colleagues who are working tirelessly to see HSCT be available to all Australians suffering from sever autoimmune diseases and promote the treatment worldwide.
Until next time, stay well:)
What is important is the two years since then. My recovery has been better than I ever imagined. For 12 years I was not able to run. Three months after my HSCT I could run again. And the improvements have not stopped there. The best things are I feel like I have become a better husband, father and person. I can play with my kids, I can lift the groceries out of the car and I can walk down stairs without using the handrail.
But even today I noticed something I did that I hadn't been able to do six months ago or for the last 14 years for that fact. Currently I'm holidaying on the Gold Coast with my family and today we were at White Water World. Kids being kids had sprinted to the queue and were (im)patiently waiting by the time I got there. The quickest way for me to get there was to duck under the railing. Six months ago that would have been an effort but as always seems to happen, I ducked under the railing and didn't even realise it until it was over. I then managed to carry up the floaty for my daughter and I by myself!
Anyway the last two years have been two of the best of my life and I'm going to take this opportunity to thank some really special people. First and most importantly my friends and family who have supported me on this journey. It is amazing to see the smiles on their faces when they notice my improvement. A special thanks must go to my wife, my parents and my inlaws. They say that family will always be there for you no matter what and that is so true. To Dr Burt, Amy, Paula and all the other staff at North Western, the care I got was faultless and without your tireless effort I never would have been able to achieve my results. Lastly to my new Reset friends and colleagues who are working tirelessly to see HSCT be available to all Australians suffering from sever autoimmune diseases and promote the treatment worldwide.
Until next time, stay well:)
Wednesday, February 26, 2014
Donations Please
In 2012 I travelled to Chicago for a hematopioetic stem cell transplant (HSCT) to treat my Chronic Inflammatory Demyelinating polyneuropathy (CIDP). I had to go to Chicago because at the time this treatment was unavailable in Australia. Two years later, this treatment is still unavailable to most people in Australia and it doesn't have to be. For the people that know me you know how remarkable and effective this treatment has been in giving me back my life. If you don't know you can check out my video here:-
CIDP HSCT Story
HSCT is nothing new. There are many haematological disorders and cancers that have been treated by HSCT since the 1960's. For various reasons it has not been used for autoimmune diseases until recently. And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.
The good news is that it is on the radar. We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness. As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.
The work we do here in Australia will also have international benefit. The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.
In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it. The first step for us is to finance the startup costs. You can help do this by leaving a donation on the GoFundMe page linked below:-
GoFundMe
Any funds collected over and above the startup costs will go into promoting stage three trials.
Make no mistake, the outcome of these trials will have a significant impact on this country and the world. It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.
Please give generously. The thousands of people with severe autoimmune diseases will thank you for it.
Stay well:)
CIDP HSCT Story
HSCT is nothing new. There are many haematological disorders and cancers that have been treated by HSCT since the 1960's. For various reasons it has not been used for autoimmune diseases until recently. And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.
The good news is that it is on the radar. We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness. As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.
The work we do here in Australia will also have international benefit. The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.
In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it. The first step for us is to finance the startup costs. You can help do this by leaving a donation on the GoFundMe page linked below:-
GoFundMe
Any funds collected over and above the startup costs will go into promoting stage three trials.
Make no mistake, the outcome of these trials will have a significant impact on this country and the world. It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.
Please give generously. The thousands of people with severe autoimmune diseases will thank you for it.
Stay well:)
Wednesday, November 6, 2013
Great news!
It's no secret that Australia is sorely behind the rest of the world in promoting HSCT as a treatment for autoimmune diseases. The article I blogged about a couple of weeks ago just proves exactly how ignorant we are too. It is embarrassing that as a highly developed country that claims to have one of the best health care systems in the world and also be a self proclaimed leader in medical research we are left wanting.
BUT it is changing. The trial at St Vincent's hospital in Sydney is proof of this. They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient. While this is great news it can also be used to highlight the short comings of the Australian system.
A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation. Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT. Now I decided to go for the treatment in Chicago. Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.
Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia. Pops is still waiting after two years, but at least the end is in sight. He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant. It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.
The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments. Australia, you need to get your act together, stop procrastinating and start saving lives.
Until next time, stay well:)
BUT it is changing. The trial at St Vincent's hospital in Sydney is proof of this. They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient. While this is great news it can also be used to highlight the short comings of the Australian system.
A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation. Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT. Now I decided to go for the treatment in Chicago. Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.
Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia. Pops is still waiting after two years, but at least the end is in sight. He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant. It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.
The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments. Australia, you need to get your act together, stop procrastinating and start saving lives.
Until next time, stay well:)
Tuesday, October 15, 2013
Tragedy
It is with great sadness that today I am writing about a fellow HSCT patient that passed away recently after complications. I did not know Gabriella. I hadn't even talked to her but the HSCT for autoimmune diseases community is still quite small so I certainly knew of her.
However, as an HSCT patient and advocate of the procedure it raises many questions. Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them. Essentially we need to tackle the proverbial elephant in the room. My points are:-
It is a tough one to answer because I have the benefit of hindsight. I think I would have still gone through with it. I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.
It is never easy contracting a nasty auto immune disease like CIDP or MS. We just have to make the best decisions that are available to us at the time. I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was. Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.
Stay well:)
However, as an HSCT patient and advocate of the procedure it raises many questions. Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them. Essentially we need to tackle the proverbial elephant in the room. My points are:-
- Is the procedure safe and is it worth the risk given the potential benefit?
- Is the institution in India to blame?
Honestly I can't answer this. I have never been to India to see the facility or meet the doctors involved. In fact I have never even researched the hospital so I can't and won't give an opinion. However, the hospital has shut down its HSCT unit pending an investigation. I can only think this is a good thing. Carrying on in a cavalier fashion as if nothing had happened would be negligent.
- Who else might be to blame?
Blame is such an ugly word. Blame assumes that someone was at fault and that might not be the case at all. It could very well be that all protocol was followed thoroughly and her death was nothing more than a tragedy. I am actually going to use the word responsible as there is not an assumption of guilt on those who are responsible. So who is responsible?
Now before you condemn me as an insensitive evil pig please read to the end as I will explain myself. The person most responsible is the patient, in this case Gabriella. "My Gosh" I hear you say. "Wasn't she the victim?" Well, yes she was. But she was also the one who decided to go through with the procedure. She would have known the risks and would have weighed up the pros and cons, the risks and benefits and would have made her decision.
I know this because it was the thought process that I went through before I left for Chicago. I had weighed up all the variable and outcomes I could think of and yes. The fact I could die did play a part. Some people thought I might be mad. That I was gambling with my life. I could not have thought of it more differently. Sure, there was a choice not to have the procedure. But that choice involved still having CIDP. Living with pain. An inability to move properly and a massively dysfunctional sense of feel and touch coupled with balance issues. When this is you situation, you start to think very differently about your situation.
In a similar way to me having brain surgery, I went into my transplant with my eyes wide open. I am sure that Gabriella did too. I also have to say that if I did die due to my transplant I would not have wanted anyone else to be responsible. I made the decision and I was prepared to take responsibility for whatever the outcome. I had even prepared a series of video messages for a variety of people and one of the points I wanted to make was that I was the one responsible. The last thing I wanted was for people to go around blaming each other for my decision. And whilst I got the blessing to go ahead with it from close friends and family, as well as past patients who advocated strongly for the procedure, The final decision was mine and mine alone.
- Would it have stopped me having my transplant had this happened to prior to me going to Chicago?
It is a tough one to answer because I have the benefit of hindsight. I think I would have still gone through with it. I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.
It is never easy contracting a nasty auto immune disease like CIDP or MS. We just have to make the best decisions that are available to us at the time. I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was. Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.
Stay well:)
Tuesday, August 20, 2013
Vaccinations
My goodness me, it has been a while since my last post. Apologies. I don't have a really good excuse, I have just been lazy. But hey, I'm writing now so good for me!
A great deal has been happening recently and for once it is not he who has been the focus of the medical interventions. That honour goes to my son who broke his arm (which I blogged about last time) went to hospital for a minor dental procedure and managed to scrape all the skin off his index finger which then became infected and needed to be treated with antibiotics. Aside from the dental procedure, which was purely cosmetic, the other two were just a nine year old boy being a nine year old boy.
After saying all that the doctors have not completely eluded me either as the juggernaut, which is my medical story rolls on. I had blood work done recently which finally showed my blood levels had returned to normal. This meant that it was time to revisit my immunisation regime and my oh my there are a lot of them.
Now for most HSCT patients this is nothing more than procedure but with a patient that had HSCT for an auto immune disease this process is much more complicated. I will elaborate.
Auto immune diseases do not just happen. Some people may have a genetic predisposition to contracting one of them but there is always an environmental trigger that starts the process. There are many things that can be the trigger. A virus or infection, a toxin, a medication or allergic reaction... The list is almost endless but one of the biggest suspects is a vaccine.
It is really quite logical. A vaccine is designed to trigger an immune response that means if a person is exposed to the disease that has been vaccinated against, the persons immune system will attack the disease. If the immune system misinterprets the vaccine it could end up causing an autoimmune (AID) disease. The problem is most medical professionals will refute this link but there are sufferers of autoimmune diseases that swear black and blue that the vaccine was their "trigger".
Personally, I believe that a vaccination could be responsible for causing an AID. But the question is whether the benefit of me having a vaccine is worth the risk of having a relapse. Since I am fairly sure that a vaccine didn't trigger my AID in the first place I think that a vaccine won't do it to me this time. However, I'm going to go pretty slowly with it just to be safe. My program will be on and off for over a year.
Just so you know, this is a decision I have taken very seriously. I let you all know how I go as I progress. Until next time, stay well:)
A great deal has been happening recently and for once it is not he who has been the focus of the medical interventions. That honour goes to my son who broke his arm (which I blogged about last time) went to hospital for a minor dental procedure and managed to scrape all the skin off his index finger which then became infected and needed to be treated with antibiotics. Aside from the dental procedure, which was purely cosmetic, the other two were just a nine year old boy being a nine year old boy.
After saying all that the doctors have not completely eluded me either as the juggernaut, which is my medical story rolls on. I had blood work done recently which finally showed my blood levels had returned to normal. This meant that it was time to revisit my immunisation regime and my oh my there are a lot of them.
Now for most HSCT patients this is nothing more than procedure but with a patient that had HSCT for an auto immune disease this process is much more complicated. I will elaborate.
Auto immune diseases do not just happen. Some people may have a genetic predisposition to contracting one of them but there is always an environmental trigger that starts the process. There are many things that can be the trigger. A virus or infection, a toxin, a medication or allergic reaction... The list is almost endless but one of the biggest suspects is a vaccine.
It is really quite logical. A vaccine is designed to trigger an immune response that means if a person is exposed to the disease that has been vaccinated against, the persons immune system will attack the disease. If the immune system misinterprets the vaccine it could end up causing an autoimmune (AID) disease. The problem is most medical professionals will refute this link but there are sufferers of autoimmune diseases that swear black and blue that the vaccine was their "trigger".
Personally, I believe that a vaccination could be responsible for causing an AID. But the question is whether the benefit of me having a vaccine is worth the risk of having a relapse. Since I am fairly sure that a vaccine didn't trigger my AID in the first place I think that a vaccine won't do it to me this time. However, I'm going to go pretty slowly with it just to be safe. My program will be on and off for over a year.
Just so you know, this is a decision I have taken very seriously. I let you all know how I go as I progress. Until next time, stay well:)
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:)
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:)
Monday, May 27, 2013
Dr Burt
Dr Burt is one of the best doctor I have ever had the pleasure of consulting with. After all, he is the doctor responsible for my HSCT which has quite simply changed my life. However, even after all the good work he has done there are still naysayers out there that are very sceptical of the process. They should watch this video as it identifies the benefits of HSCT and answers most of the questions that the critics raise. This is not me saying it. This is one of the most qualified and forward thinking doctors in this field with an outstanding reputation to boot. Hopefully getting this message out will allow the treatment to become much more available to more people and make a huge difference in the lives of many.
Enjoy and stay well:)
http://www.youtube.com/watch?v=5SmLUYomArI
http://www.youtube.com/watch?v=rOlk_-5QcDI
Enjoy and stay well:)
http://www.youtube.com/watch?v=5SmLUYomArI
http://www.youtube.com/watch?v=rOlk_-5QcDI
Tuesday, May 21, 2013
Am I cured?
It is the four letter "c" word that send shivers down the spine of any doctor or health care professional. Using it inappropriately can spell disaster for anyone in the medical field with your low breed ambulance chasing lawyers looking to file suit on whoever dares even mutter the word. Yes, I am talking about cure.
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations. As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment. Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.
There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not. After all, although it has been highly successful in most cases, it is not completely successful in all of them. So, it is not a cure for everyone. But I am a selfish patient so the question I will be asking is has it cured me?
Now I suffered from chronic inflammatory demyelinating polyneuropathy. Chronic basically means for a long period of time. Now I suffered from CIDP for a long period of time but am I still suffering? A question I will visit later.
Inflammatory is basically referring to a biological action to a harmful stimuli. In this case my immune system. Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP. A normal test should be less than five, but it can sometimes be elevated for obvious reasons. For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP. But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.
Thirdly, demyelinating. Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb. Meaning that the action is happening right now. However, EMG results would show that this is not the case and my nerves are actually regrowing. So the is no demyelinating process underway.
Polyneuropathy. Poly means many. Neuro means nerves. Pathy refers to disease. Essentially, disease of many nerves. If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.
In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves. I am going to go with the latter and boldly say I am cured. However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano. The medical profession has a word for this too. It's called remission. Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind. Until next time, stay well:)
Monday, May 13, 2013
A big week
I had lots planned for last week. I not only feel well enough now to be able to get off my BFA and do something, I actually feel driven to do so too. Honestly, this is a new feeling for me. I haven't felt like this in the best part of ten years and I had forgotten what is was like to feel motivated and driven. It is amazing to think that when you are sick what effect it has on you that you don't even realise.
Anyway, my motivation took a dive when I started developing a cold on Monday. But this was no time to crawl back under my stone. I just had to suck it up and push on which I did. Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.
Anyway, I had my first meeting on Tuesday morning. It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases. They do this by financially assisting sufferers with treatment, medication and equipment. I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).
I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure. Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability. From where I stood the Steve Waugh Foundation was a good fit.
My meeting was very constructive however, it was not quite the right fit. I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so. The Steve Waugh Foundation is set up to assist people financially. I want to directly advocate for people and help find treatments for them so it is not a perfect match. On the plus side I got some great contacts and was able to figure out my next step.
In the long run this is the direction I want to go in. I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others. So, watch this space. I have only just started.
On the other "professional" note I met with an old friend who has now become a neurologist. Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT. Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded. Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan. I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.
I also met with someone who could help me with my book. The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable. I honestly have to say that without her assistance I probably wouldn't finish the book. I was really quite nervous when I went to see her. I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish. Luckily, she said she really liked it and keep going. Phew. I once again could breathe and keep going with renewed confidence that I was doing a good job.
But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest. When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends. After I got sick I had to stop playing as I couldn't run the length of the wicket any more.
When I had my HSCT last year one of my goals was to play cricket again. So I hooked up with old side and went out for a game. As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches. And it did. According to the score card I was the best performing member of my team! Which doesn't say much, my team isn't very good but I'll take it anyway. Oh and yes, we got severely hammered. What counted for me though is that I played. And I not only played but I was competitive.
I have attached the score card. They have me down as playing as my nickname, Pommie. Which isn't so bad. At least I am not Gobble Gobble or Huggies.
Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek. What an awesome movie! Until next time, stay well:)
Anyway, my motivation took a dive when I started developing a cold on Monday. But this was no time to crawl back under my stone. I just had to suck it up and push on which I did. Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.
Anyway, I had my first meeting on Tuesday morning. It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases. They do this by financially assisting sufferers with treatment, medication and equipment. I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).
I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure. Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability. From where I stood the Steve Waugh Foundation was a good fit.
My meeting was very constructive however, it was not quite the right fit. I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so. The Steve Waugh Foundation is set up to assist people financially. I want to directly advocate for people and help find treatments for them so it is not a perfect match. On the plus side I got some great contacts and was able to figure out my next step.
In the long run this is the direction I want to go in. I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others. So, watch this space. I have only just started.
On the other "professional" note I met with an old friend who has now become a neurologist. Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT. Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded. Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan. I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.
I also met with someone who could help me with my book. The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable. I honestly have to say that without her assistance I probably wouldn't finish the book. I was really quite nervous when I went to see her. I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish. Luckily, she said she really liked it and keep going. Phew. I once again could breathe and keep going with renewed confidence that I was doing a good job.
But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest. When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends. After I got sick I had to stop playing as I couldn't run the length of the wicket any more.
When I had my HSCT last year one of my goals was to play cricket again. So I hooked up with old side and went out for a game. As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches. And it did. According to the score card I was the best performing member of my team! Which doesn't say much, my team isn't very good but I'll take it anyway. Oh and yes, we got severely hammered. What counted for me though is that I played. And I not only played but I was competitive.
I have attached the score card. They have me down as playing as my nickname, Pommie. Which isn't so bad. At least I am not Gobble Gobble or Huggies.
Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek. What an awesome movie! Until next time, stay well:)
Wednesday, April 10, 2013
Happy Birthday to Me!!!!!!
Yes today is my birthday. My brand new birthday! And today I am 1. Not 41. Just 1. Alright it's not my real birthday but my new birthday. Exactly one year ago today I had my Stem Cell Transplant and patients and medical staff alike consider this your new birthday. Now being one for me is really quite nice and is a great excuse for me to pretend I am young again. I don't think it would really fly on official documentation but in social situations (other than going to the pub) I think it is pretty cool.
However, just like a real one year old the last twelve months have been a real learning experience for me. Every single day I have to relearn exactly what I am capable of as it is still increasing everyday, just like a real one year old. The only difference is I am much more aware of what is happening.
So what has changed over the last twelve months? The list is almost endless. There has been so much improvement. I guess the first thing to go was the nerve pain. Almost instantly it disappeared, but it did return when my nerves started regenerating. Fortunately it was easily treated with minor surgery.
Other more notable improvements are that I have started swimming further and faster, my balance has improved so much I have been able to ride a bike and I have started running. Maybe I should do a triathlon. But it is the little things that make a world of difference. I can now sleep through the night without getting up to go to the toilet and if I need the toilet I have no trouble getting there. I used to have to crawl. I can easily walk up and down stairs, I can unscrew my own bottle tops, I can kick the footy with my son and dance with my daughter. Standing up for long periods of time is not an issue any more and I can walk much further too. All in all it's way better.
On a completely different note you have probably noticed (if you are a regular reader) I have changed the look and feel of my blog. I would love your feedback on what you think. It has been over three years since I first started writing this blog and since then I have chalked up nearly four hundred posts. I have really loved the way it looked but change is always good. I have also had feedback saying the black on white is hard to read.
On a last note I would also like to wish my fellow patient and stem cell transplant recipient Cory Smallegan a happy birthday as he had his transfusion on the same day as me. To Bob and Wendy who were at the hospital as the same time as us I hope you too enjoy your birthdays next week and just remember, from now on under my new formula for age I'm older than you both;)
Well that's it from me today. I hope you have enjoyed reading it as much as I have enjoyed writing it and I will continue to do so for a while yet. Stay well:)
However, just like a real one year old the last twelve months have been a real learning experience for me. Every single day I have to relearn exactly what I am capable of as it is still increasing everyday, just like a real one year old. The only difference is I am much more aware of what is happening.
So what has changed over the last twelve months? The list is almost endless. There has been so much improvement. I guess the first thing to go was the nerve pain. Almost instantly it disappeared, but it did return when my nerves started regenerating. Fortunately it was easily treated with minor surgery.
Other more notable improvements are that I have started swimming further and faster, my balance has improved so much I have been able to ride a bike and I have started running. Maybe I should do a triathlon. But it is the little things that make a world of difference. I can now sleep through the night without getting up to go to the toilet and if I need the toilet I have no trouble getting there. I used to have to crawl. I can easily walk up and down stairs, I can unscrew my own bottle tops, I can kick the footy with my son and dance with my daughter. Standing up for long periods of time is not an issue any more and I can walk much further too. All in all it's way better.
On a completely different note you have probably noticed (if you are a regular reader) I have changed the look and feel of my blog. I would love your feedback on what you think. It has been over three years since I first started writing this blog and since then I have chalked up nearly four hundred posts. I have really loved the way it looked but change is always good. I have also had feedback saying the black on white is hard to read.
On a last note I would also like to wish my fellow patient and stem cell transplant recipient Cory Smallegan a happy birthday as he had his transfusion on the same day as me. To Bob and Wendy who were at the hospital as the same time as us I hope you too enjoy your birthdays next week and just remember, from now on under my new formula for age I'm older than you both;)
Well that's it from me today. I hope you have enjoyed reading it as much as I have enjoyed writing it and I will continue to do so for a while yet. Stay well:)
Friday, March 22, 2013
CIDP Variants
Something I have said previously is that CIDP never seems to manifest itself in exactly the same way twice. And it is pretty much the same for all Autoimmune Diseases. The article in this link is really interesting and pretty much corroborates that. Stay well:)
http://www.cidpusa.org/variants.html
http://www.cidpusa.org/variants.html
Thursday, March 21, 2013
Foiled by my Own Success
As you all know, if you have read my blog before, I went to Chicago last year to have a stem cell transplant for my CIDP. And if you haven't noticed, it has worked even better than I expected. Yesterday I swam over a kilometre at the local pool and today I cycled for an hour. A year ago I simply wouldn't have had the balance to sit on a bike, let alone pedal, and get somewhere.
But what is it that has foiled me? Well, when I was first diagnosed with CIDP one of the symptoms I had was that my socks always felt creased in my shoes. It didn't hurt but it was really annoying. I used to pull my socks up as far as they would go and and the symptoms would not subside. I would take off my shoe to see if there was something wrong with the sole or I had something jammed in there, but always to no avail.
Eventually I just simply had to come to terms with the fact that it was a symptom of CIDP and it was not going to simply disappear. So I decided to just ignore it. Realistically it was the only option I had available to me and after time I least to accomplish this quite successfully.
Now thinking back with the benefit of hindsight I have to say that this symptom had disappeared after my HSCT, but in my successful attempts to ignore it, I hadn't noticed. So when I noticed a crease in my left foot I simply decided to ignore it. And that was my mistake. I went all day successfully ignoring it. I walked both kids to school. I went for a bike ride and was gone for about an hour and a half. I really had quite an active day.
Finally that evening the annoyance had turned to pain and I took my shoe off to have a look. Not only was my sock creased up, it had managed to wrap itself up around a small stick. I had even managed to ignore it for so long a blister had appeared on the side of my foot. At this point I felt there was not much I could do but laugh. A year ago I never would have done that much exercise to warrant a blister and before I got sick I would have checked straight away. I guess I was foiled by my own success! Stay well:)
But what is it that has foiled me? Well, when I was first diagnosed with CIDP one of the symptoms I had was that my socks always felt creased in my shoes. It didn't hurt but it was really annoying. I used to pull my socks up as far as they would go and and the symptoms would not subside. I would take off my shoe to see if there was something wrong with the sole or I had something jammed in there, but always to no avail.
Eventually I just simply had to come to terms with the fact that it was a symptom of CIDP and it was not going to simply disappear. So I decided to just ignore it. Realistically it was the only option I had available to me and after time I least to accomplish this quite successfully.
Now thinking back with the benefit of hindsight I have to say that this symptom had disappeared after my HSCT, but in my successful attempts to ignore it, I hadn't noticed. So when I noticed a crease in my left foot I simply decided to ignore it. And that was my mistake. I went all day successfully ignoring it. I walked both kids to school. I went for a bike ride and was gone for about an hour and a half. I really had quite an active day.
Finally that evening the annoyance had turned to pain and I took my shoe off to have a look. Not only was my sock creased up, it had managed to wrap itself up around a small stick. I had even managed to ignore it for so long a blister had appeared on the side of my foot. At this point I felt there was not much I could do but laugh. A year ago I never would have done that much exercise to warrant a blister and before I got sick I would have checked straight away. I guess I was foiled by my own success! Stay well:)
Tuesday, March 5, 2013
It's all come crashing down......
Just when everything seems to be tracking along nicely, some bad news strikes and I am plunged back into the world of hospitals and medical procedures once again. All my fellow CIDPers and HSCTers are probably waiting for me to talk about that horrible "R" word (relapse), but no. Fortunately not. Everything is going swimmingly in that respect. I am referring to a kidney stone that has been quietly growing.
It is not as bad as it sounds. I picked up the stone in a routine X-ray I had last week and it is not that big yet. It is only about 8mm but I still booked into see the urologist as sooner or later something has got to be done about it. On the positive side, only one kidney is affected, it has been 18 months since my last surgical intervention and I have no residual pain. Any of my fellow cystinuric readers will be quite jealous.
I wasn't surprised I had a kidney stone. Every cystinuric patient expects them on a regular basis. I was actually surprised it wasn't bigger. When I had my Stem Cell Transplant I effectively dropped my fluid intake to less than 500ml/day and most of my medications I wasn't taking as I felt so nauseous. My old nephrologist would have been furious as he didn't care about any of my other conditions as long as I got no stones.
So where to from here? I had a good frank discussion with my urologist (which was a little boring as it was almost the same as last time I saw him) about when to intervene surgically. We agreed that the ideal time was when the stone was at a size small enough to be treated with one surgery but not large enough to warrant two interventions. Basically put, the fewer number of surgeries over a lifetime, the better.
However, we both agreed that that time was about now, but there was no immediate hurry. So we slotted a date into the diary that suited me best and away we go. FYI that date is the 18th of April. Until then, it's just focusing on nerve and muscle regeneration and getting my fitness to the level I want it to be at. Until next time, stay well:)
It is not as bad as it sounds. I picked up the stone in a routine X-ray I had last week and it is not that big yet. It is only about 8mm but I still booked into see the urologist as sooner or later something has got to be done about it. On the positive side, only one kidney is affected, it has been 18 months since my last surgical intervention and I have no residual pain. Any of my fellow cystinuric readers will be quite jealous.
I wasn't surprised I had a kidney stone. Every cystinuric patient expects them on a regular basis. I was actually surprised it wasn't bigger. When I had my Stem Cell Transplant I effectively dropped my fluid intake to less than 500ml/day and most of my medications I wasn't taking as I felt so nauseous. My old nephrologist would have been furious as he didn't care about any of my other conditions as long as I got no stones.
So where to from here? I had a good frank discussion with my urologist (which was a little boring as it was almost the same as last time I saw him) about when to intervene surgically. We agreed that the ideal time was when the stone was at a size small enough to be treated with one surgery but not large enough to warrant two interventions. Basically put, the fewer number of surgeries over a lifetime, the better.
However, we both agreed that that time was about now, but there was no immediate hurry. So we slotted a date into the diary that suited me best and away we go. FYI that date is the 18th of April. Until then, it's just focusing on nerve and muscle regeneration and getting my fitness to the level I want it to be at. Until next time, stay well:)
Thursday, December 6, 2012
Tuesday, November 13, 2012
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