I now have only 18 days to go before I jet off to Chicago for what will hopefully be one of the major turning points of my life. But right now I am at a point that can only be described as emotional. Up until now I have had so much to occupy myself that I haven't been able to really stop and think about how I felt.
At the end of last year I was so busy just trying to get on the trial, with all the correspondence, doctors appointments and tests etc. There were also a few hiccups along the way just to make it interesting. Then once I got asked to come to Chicago I was super busy working out all the logistics, working out my transplant schedule, doing some final research and finding out what I had to bring and where to get it from. I then went on holidays which was a great distraction.
However, now I'm back in Melbourne, the kids are back at school and life has returned to some kind of normality. And in the last couple of days things have been somewhat strange. I have still been super busy, but now instead of preparing to go to Chicago, I am preparing to leave Melbourne.
And that makes it all seem eerily real. So many people want to catch up with me before I leave, which is great, but I seem to be running from social event to tying up a lose end and in between I am getting quite emotional. I feel like a soldier in his final days before shipping off to war. It is starting to hit home that this is a dangerous procedure, with potentially fatal consequences, so worry and nervousness are starting to play apart.
Sadness also has a role. Yesterday was my daughters last day of school holiday, (my son had already returned) so I took her out to see a movie and ice cream. We both had a wonderful time, but I did start to think about the fact that I will not see either of my kids for over two months. The longest I have gone without seeing them before is a meagre three days and I spoke with them on the phone everyday.
I also feel like I might be abandoning them, especially if the worst happens. Years ago I reconciled with myself that I am not afraid to die. I feel that there are many things worse than death, but I certainly do not have a death wish. I think life is great and worth living. I also would not want to leave my kids without a dad.
So, do I have any second thoughts. Not a chance. I am not doing this so I can abandon my family. One of the reasons I am doing this is so I can be a better father and a better husband. About a year ago, my daughter learnt to ride a bike. I always figured that I would be the one to teach both my kids to ride a bike, but sadly CIDP robbed me of that privilege and I can chalk that up to one of the worst experiences of my life as I looked on from the sidelines.
Now I can't exactly ask the kids to forget how to ride a bike so I can teach them again. That bird has flown. But there is a bunch of stuff I could do with them that I am incapable of doing right now. So I do have worries and I do have concerns and the last couple of days have been emotional, but I feel it is important to spend as much time with the kids as possible and catch up with as many friends as I can. Because I'm going. I'm going no matter what. Stay well:)
Tuesday, January 31, 2012
Monday, January 30, 2012
1 Million People for RARE Diseases
RARE disease day is on the 29th of February, which is now just a meagre 30 days away, and the first big push for 1 Million for RARE is starting with the blog hop. Directly below this you will find the RARE logo. The link will take you directly to their facebook site. We are after 1 Million people to like their page.
So why should you like their page? Here are some facts for you to think about:
There are over 7000 diseases in the rare disease database.
350 million people suffer from a rare disease.
That's 1 in 20 or 5% of the world population.
If sufferers lived in one country it would be the 3rd largest country in the world, bigger than the USA.
Less than 5% of rare diseases have any therapies or treatments.
75% of sufferers are children.
If you pick one of the rare diseases, there is a good chance that you have never heard of it, or know anyone that suffers from it. But you will know some of the diseases on the list and maybe even sufferers. Below is a bunch of links to other blogs of people who suffer from a rare disease, or care for those who do. Each person has a heartfelt and compelling story. It makes you wonder what you can do to help? Well now you can do something. You can simply like their facebook page. In case you are interested, you can read my story here.
Alone, each disease seems quite insignificant. Its cry for help not just drowned out be the 7000 other rare diseases, but the high profile diseases that many are afflicted with. Well, it is time for a change. With the current advancements in research, the mapping of the human genetic code and the treatments that have sprouted hence, there is no reason why we cannot develop treatments to turn the tide on these diseases. To improve peoples quality of life. To save lives. Instead of everyone making their own noise, we can all club together to sing in harmony. A resounding chorus of 350 million people that cannot be ignored.
Ironically, there are some treatments out there that could be used to treat other disorders, it is simply that nobody has thought to do it. I have one example that has effected me personally.
There is a doctor practising out of North Western Hospital in Chicago. His name is Richard Burt. Years ago he was working with bone marrow transplant patients and he noticed that patients post treatment were being given their childhood inoculations all over again. Why? Because effectively their immune system had been reset. So he had the wonderful idea that if a stem cell transplant reset the immune system, why couldn't it be used to treat an autoimmune disease?
And that is where I am at. One of my rare conditions, CIDP, is an auto immune disease, and on the 18th of February I am headed off to Chicago to hopefully be accepted into Dr Burts' trial. Now at the moment, this is a trial, not an accepted treatment, but patients have touted it is as a cure even though the doctors involved are a little more reserved. I will be blogging about the whole experience right here, on Shakes and Stones.
The point is stem cell transplants have been around for forty years and this treatment is still not available as a main stream treatment for auto immune diseases. In the mean time people have suffered and died. So what other treatments are out there that could potentially be used for other diseases that we don't know about? Unless we draw attention to all rare diseases collectively we will never know. So like the facebook page. 350 million people will thank you for it. Stay well:)
So why should you like their page? Here are some facts for you to think about:
If you pick one of the rare diseases, there is a good chance that you have never heard of it, or know anyone that suffers from it. But you will know some of the diseases on the list and maybe even sufferers. Below is a bunch of links to other blogs of people who suffer from a rare disease, or care for those who do. Each person has a heartfelt and compelling story. It makes you wonder what you can do to help? Well now you can do something. You can simply like their facebook page. In case you are interested, you can read my story here.
Alone, each disease seems quite insignificant. Its cry for help not just drowned out be the 7000 other rare diseases, but the high profile diseases that many are afflicted with. Well, it is time for a change. With the current advancements in research, the mapping of the human genetic code and the treatments that have sprouted hence, there is no reason why we cannot develop treatments to turn the tide on these diseases. To improve peoples quality of life. To save lives. Instead of everyone making their own noise, we can all club together to sing in harmony. A resounding chorus of 350 million people that cannot be ignored.
Ironically, there are some treatments out there that could be used to treat other disorders, it is simply that nobody has thought to do it. I have one example that has effected me personally.
There is a doctor practising out of North Western Hospital in Chicago. His name is Richard Burt. Years ago he was working with bone marrow transplant patients and he noticed that patients post treatment were being given their childhood inoculations all over again. Why? Because effectively their immune system had been reset. So he had the wonderful idea that if a stem cell transplant reset the immune system, why couldn't it be used to treat an autoimmune disease?
And that is where I am at. One of my rare conditions, CIDP, is an auto immune disease, and on the 18th of February I am headed off to Chicago to hopefully be accepted into Dr Burts' trial. Now at the moment, this is a trial, not an accepted treatment, but patients have touted it is as a cure even though the doctors involved are a little more reserved. I will be blogging about the whole experience right here, on Shakes and Stones.
The point is stem cell transplants have been around for forty years and this treatment is still not available as a main stream treatment for auto immune diseases. In the mean time people have suffered and died. So what other treatments are out there that could potentially be used for other diseases that we don't know about? Unless we draw attention to all rare diseases collectively we will never know. So like the facebook page. 350 million people will thank you for it. Stay well:)
Saturday, January 28, 2012
Webster pack
I had a question via facebook about Webster packs. The picture below describes it best:
It is put together all your pills into doses by your pharmacist so they can be easily taken. Stay well:)
It is put together all your pills into doses by your pharmacist so they can be easily taken. Stay well:)
What to bring?
As my day of travel comes ever closer I have to think about what I am going to pack for my voyage over the Pacific. My fellow CIDP friend, Wendy, came up with a very good idea to send a package over ahead of time. I wish this was feesable because it would be handy to have my stuff waiting in Chicago for me and not have to worry about lugging it all over with me. But the stuff I'd send is quite important and to post it registered over seas would be too expensive. But hey, it is just a bag, I can take it with me.
One of the issues I do have is size and weight. If I was going to hospital in Melbourne I would not worry about how much I had to take. I just shove it all in the car and job done. If I forget anything, which I have done before, my wife can easily run it down to me. A luxury I will not have in Chicago.
I have decided to split my list up into four categories. They are medical items, entertainment and electronics, things to get in Chicago and the usual travel items. I will start with the usual medical items:-
x-rays- I need to take all relevant films. I have had a chest x-ray, sinus CT scan, an old MRI and a kidney x-ray. The first three the North Western hospital already have copies of, but they have already lost them once, so I will take extras just in case. The people at North Western also seem to be very thorough, and since I have a kidney disorder they will probably want it checked prior to my SCT. If I needed treatment for a kidney stone I would like to get it taken care of by my people here in Melbourne who I know and trust and not have to break in a new urologist in Chicago. Luckily the x-ray was clear, so I will take that as proof.
Other test- ECG's, respiratory function tests etc... I know that I have sent them all through to Chicago, but just in case, I bring a copy with me anyway.
Letters from doctors- Most people that have an SCT nearly always have something else wrong with them, big it big or small. I have two things that I think the guys at North Western have never seen before. First, I have a deep brain stimulator. It adds a complication as any foreign body in your system can harbour an infection and mine just happens to also go straight into my brain. The letter from my movement disorder specialist simply acknowledges that I am aware of the complications. Second, I have a letter from my nephrologist saying there are no contra indications to cystinuria and an SCT. Lastly, I have a letter from my GP explaining why I have about 100 different types of pills on me and why I cant be scanned at the airport.
Pills- And I have bucket loads of them. Plus the extras that the lovely people at North Western have asked me to take. I will get my pharmacist to do my regular medication into Webster packs so it will all be easy to take when I'm over there.
The next category is entertainment and electronics:-
Computer- If I am going to blog while I am in Chicago I will need my trusty Mac. I will also need it for keeping in touch with people via facebook and for games and DVD's to stop me from going completely insane.
Camera- Fun, not fun, really not fun, hard etc... One thing for sure, it will be interesting. I intend to get pictures of it to share with you all.
Video Camera- I figured after a week of chemotherapy I might not feel like blogging so I might start vlogging. I hope it will also give people a better and more accurate look at the experience of what I am going through.
Adapters- Those yanks have funny electricity, so I will need all the correct adapters for all my deliciously exciting array of electrical appliances.
iPad- When the computer is too cumbersome I can simply slide my iPad into my satchel and away I go. I also keep my diary on the iPad.
Books- With an awful lot of time to kill I figured it would be a good chance to do some reading. I already have a small queue of books I want to read but have not got around to yet.
The usual travel items.
Clothes- Yeah, kind of essential. It is going to be a sizeable amount. I will need hospital clothes, loose, comfy, daggy. I will also need clothes for outside the hospital that will have to be a little smarter. Also, it will be cold in Chicago, so I'll need to rug up.
Toiletries- Kind of essential. However, I not going to bore you with the content of my bathroom bag, and beside I don't want to divulge my secret penchant for cross dressing;)
Things to buy when I get there.
Mobile (Cell) phone - just a cheap rubbishy disposable mainly for local calls. I plan to keep in touch with home using facetime.
Big pillow- I think it is essential for comfort in hospital. However, big and travel don't go well together, so I'll look for one when I get over there.
Yoga mat- Again, with size limitations it would probably make it easier just to buy one over there. They are not exactly expensive.
So that about wraps it up. Fortunately for me my wife will be coming out two weeks after me, so if I forget anything, she could bring it out. If you have any suggestions of things I should take, let me know. Until next time, stay well:)
One of the issues I do have is size and weight. If I was going to hospital in Melbourne I would not worry about how much I had to take. I just shove it all in the car and job done. If I forget anything, which I have done before, my wife can easily run it down to me. A luxury I will not have in Chicago.
I have decided to split my list up into four categories. They are medical items, entertainment and electronics, things to get in Chicago and the usual travel items. I will start with the usual medical items:-
x-rays- I need to take all relevant films. I have had a chest x-ray, sinus CT scan, an old MRI and a kidney x-ray. The first three the North Western hospital already have copies of, but they have already lost them once, so I will take extras just in case. The people at North Western also seem to be very thorough, and since I have a kidney disorder they will probably want it checked prior to my SCT. If I needed treatment for a kidney stone I would like to get it taken care of by my people here in Melbourne who I know and trust and not have to break in a new urologist in Chicago. Luckily the x-ray was clear, so I will take that as proof.
Other test- ECG's, respiratory function tests etc... I know that I have sent them all through to Chicago, but just in case, I bring a copy with me anyway.
Letters from doctors- Most people that have an SCT nearly always have something else wrong with them, big it big or small. I have two things that I think the guys at North Western have never seen before. First, I have a deep brain stimulator. It adds a complication as any foreign body in your system can harbour an infection and mine just happens to also go straight into my brain. The letter from my movement disorder specialist simply acknowledges that I am aware of the complications. Second, I have a letter from my nephrologist saying there are no contra indications to cystinuria and an SCT. Lastly, I have a letter from my GP explaining why I have about 100 different types of pills on me and why I cant be scanned at the airport.
Pills- And I have bucket loads of them. Plus the extras that the lovely people at North Western have asked me to take. I will get my pharmacist to do my regular medication into Webster packs so it will all be easy to take when I'm over there.
The next category is entertainment and electronics:-
Computer- If I am going to blog while I am in Chicago I will need my trusty Mac. I will also need it for keeping in touch with people via facebook and for games and DVD's to stop me from going completely insane.
Camera- Fun, not fun, really not fun, hard etc... One thing for sure, it will be interesting. I intend to get pictures of it to share with you all.
Video Camera- I figured after a week of chemotherapy I might not feel like blogging so I might start vlogging. I hope it will also give people a better and more accurate look at the experience of what I am going through.
Adapters- Those yanks have funny electricity, so I will need all the correct adapters for all my deliciously exciting array of electrical appliances.
iPad- When the computer is too cumbersome I can simply slide my iPad into my satchel and away I go. I also keep my diary on the iPad.
Books- With an awful lot of time to kill I figured it would be a good chance to do some reading. I already have a small queue of books I want to read but have not got around to yet.
The usual travel items.
Clothes- Yeah, kind of essential. It is going to be a sizeable amount. I will need hospital clothes, loose, comfy, daggy. I will also need clothes for outside the hospital that will have to be a little smarter. Also, it will be cold in Chicago, so I'll need to rug up.
Toiletries- Kind of essential. However, I not going to bore you with the content of my bathroom bag, and beside I don't want to divulge my secret penchant for cross dressing;)
Things to buy when I get there.
Mobile (Cell) phone - just a cheap rubbishy disposable mainly for local calls. I plan to keep in touch with home using facetime.
Big pillow- I think it is essential for comfort in hospital. However, big and travel don't go well together, so I'll look for one when I get over there.
Yoga mat- Again, with size limitations it would probably make it easier just to buy one over there. They are not exactly expensive.
So that about wraps it up. Fortunately for me my wife will be coming out two weeks after me, so if I forget anything, she could bring it out. If you have any suggestions of things I should take, let me know. Until next time, stay well:)
Wednesday, January 25, 2012
3rd Last
3rd last what? If it was a race of some description I would be jumping from the rafters, because 3rd last is not last. The last time I was in a proper race was a swim, and alas, that time I came dead last. But forgive me. I digress, I'm not here to lament about years gone by. Back to the subject, 3rd last.
Hopefully, all being well I will have had my 3rd last IVIG infusion EVER. Fellow CIDPers would understand that IVIG infusions suck, so please understand my excitement at only having two more to go. But it wasn't my best infusion day. In fact, far from it. After telling people exactly how I cope with my infusion day in a previous post titled My Monthly Dose of Boring, I went and did exactly the opposite.
My day started when I woke up at 8.15am. Oops, only 45 minutes to go until I was due at the hospital. So skip exercise, skip breakfast, quick shower and straight to the hospital. Miraculously I made it on time, but my preparation was far less than perfect, but I did think that would be the end of it, but I was wrong.
I got to day oncology, got myself set up and then found I'd forgotten my head phones. Understandably, I can't watch any DVD's on my computer without them because it is disrupting to the other patients. The hospital could provide a pair, but it took two hours to get them. Angry Birds and Pet Shop Story got a work out on my ipad, but I was looking forward to watching the movies I downloaded, but I had to wait.
So I will chalk today's IVIG up to an example of what not to do. But I must not lose sight of what's important. It was my 3rd last IVIG. Next time it will be the day before I go to Chicago. Next time I will do it better. Stay well:)
Hopefully, all being well I will have had my 3rd last IVIG infusion EVER. Fellow CIDPers would understand that IVIG infusions suck, so please understand my excitement at only having two more to go. But it wasn't my best infusion day. In fact, far from it. After telling people exactly how I cope with my infusion day in a previous post titled My Monthly Dose of Boring, I went and did exactly the opposite.
My day started when I woke up at 8.15am. Oops, only 45 minutes to go until I was due at the hospital. So skip exercise, skip breakfast, quick shower and straight to the hospital. Miraculously I made it on time, but my preparation was far less than perfect, but I did think that would be the end of it, but I was wrong.
I got to day oncology, got myself set up and then found I'd forgotten my head phones. Understandably, I can't watch any DVD's on my computer without them because it is disrupting to the other patients. The hospital could provide a pair, but it took two hours to get them. Angry Birds and Pet Shop Story got a work out on my ipad, but I was looking forward to watching the movies I downloaded, but I had to wait.
So I will chalk today's IVIG up to an example of what not to do. But I must not lose sight of what's important. It was my 3rd last IVIG. Next time it will be the day before I go to Chicago. Next time I will do it better. Stay well:)
Tuesday, January 24, 2012
The funny drought is over.
It has been a while since I put a cartoon or something up just for s#*ts and giggles so here is something from the archives to laugh about. If like me you are a Monty Python fan you'll like this. Bing;)
Focus
Yes, it is time to focus. Alas, the holiday is over and I have left not so sunny Queensland for sunny Victoria, (Yes you did hear right) and I really have to focus on what needs to be done. After all, it is not just a two day romantic getaway or a boys golf weekend. It is two months in the USA where I am probably going to endure the toughest medical procedure I have ever had. And I've had some doozies!
Right now, I have many things running through my mind so I think that I have to methodically go through everything and write myself a checklist. When I do that I normally find that there actually is not as much to do as I thought. So why not? I'll do the first draft now right here.
1. What to bring? A while ago I wrote a post about what I think one should take when confronted with a stay in hospital. That post is here. This I would say will be much more detailed. I will blog about this once the list is close to its final formulation.
2. Visa. My travel agent tells me that as my trip is under 99 days I don't need a visa for the USA, but I want to find out for sure anyway.
3. Home Affairs. I am going away for more than two months. I want to make sure the kids are ok and things are going to run smoothly. It starts tomorrow when I take the car in for a service.
4. Work. Things have been going great at work for the last year and a half. I have no reason to believe that will change, but I still have to dot the i's etc...
3. Travel and Hotel arrangements. My travel has been organised, but I have to organise it for my wife for when she comes out. We have a time line for her now. It would be nice to have her there for the whole time, but it is important to have one of us in Australia for the kids. I think we are stretching it already and I think most parents would agree that the kids come first, but the fact I will have company will be great.
4. Intragam. I still have 2 IVIG before I leave.
5. Doctors Visits. I have to see my GP and one specialist before I go in order to get it all organised to go.
6. Continue blogging. Yes, writing this blog for me has many benefits, one of which is keeping me focused and organised. I get to sit down everyday, collect my thoughts and process them. It is very good for me.
Well, that's all for now, my posting should be a little more regular from now on. Until next time, stay well:)
Right now, I have many things running through my mind so I think that I have to methodically go through everything and write myself a checklist. When I do that I normally find that there actually is not as much to do as I thought. So why not? I'll do the first draft now right here.
1. What to bring? A while ago I wrote a post about what I think one should take when confronted with a stay in hospital. That post is here. This I would say will be much more detailed. I will blog about this once the list is close to its final formulation.
2. Visa. My travel agent tells me that as my trip is under 99 days I don't need a visa for the USA, but I want to find out for sure anyway.
3. Home Affairs. I am going away for more than two months. I want to make sure the kids are ok and things are going to run smoothly. It starts tomorrow when I take the car in for a service.
4. Work. Things have been going great at work for the last year and a half. I have no reason to believe that will change, but I still have to dot the i's etc...
3. Travel and Hotel arrangements. My travel has been organised, but I have to organise it for my wife for when she comes out. We have a time line for her now. It would be nice to have her there for the whole time, but it is important to have one of us in Australia for the kids. I think we are stretching it already and I think most parents would agree that the kids come first, but the fact I will have company will be great.
4. Intragam. I still have 2 IVIG before I leave.
5. Doctors Visits. I have to see my GP and one specialist before I go in order to get it all organised to go.
6. Continue blogging. Yes, writing this blog for me has many benefits, one of which is keeping me focused and organised. I get to sit down everyday, collect my thoughts and process them. It is very good for me.
Well, that's all for now, my posting should be a little more regular from now on. Until next time, stay well:)
Wednesday, January 18, 2012
1 Month to Go
It is only one month to go until I board a plane to what will potentially be the biggest adventure I have embarked upon since I started my business in 2003. And how am I feeling? Although the milestone is significant I haven't really paid much attention to it. To me, it really isn't much different to how I felt yesterday or how I'll feel tomorrow, although I am aware of it.
At the moment I am just concentrating on having a lovely family holiday. We are off to the beach today which the kids are looking forward to. I have decided that I put preparation for Chicago on ice until I get back to Melbourne on the weekend. Until next time, stay well:)
At the moment I am just concentrating on having a lovely family holiday. We are off to the beach today which the kids are looking forward to. I have decided that I put preparation for Chicago on ice until I get back to Melbourne on the weekend. Until next time, stay well:)
Tuesday, January 17, 2012
Broad Cause
I stand for the Global Genes Project to help people with rare diseases. I stand for improving the quality of life of all people who are sick. You can help support me by going to my Broad Cause page and sharing it.
If you like you can also find me on technorati, or you can follow me on twitter @shakesandstones. If you are really nice to me to you can add me as a friend on facebook or you can join my circles at google+. Just send me a note saying you are following my blog.
But if you do one thing today, support me supporting the Global Genes Project at Broad Cause. Stay well:)
If you like you can also find me on technorati, or you can follow me on twitter @shakesandstones. If you are really nice to me to you can add me as a friend on facebook or you can join my circles at google+. Just send me a note saying you are following my blog.
But if you do one thing today, support me supporting the Global Genes Project at Broad Cause. Stay well:)
Monday, January 16, 2012
10% of people have antibodies that attack their own tissue
Yes, it is a much higher figure than I imagined too. The following article explains the finding made by the National Institute of Environmental Health Sciences in the USA:-
Antibodies that attack their own tissue
It explains that just because you have the antibodies does not mean you will have an autoimmune disease. There is no way to know just which disease the antibodies will manifest themselves in (if at all). They are far more prevalent in the elderly, women and people of African descent. Since I am none of those three demographics I must just be really unlucky;)
Until next time, stay well:)
Antibodies that attack their own tissue
It explains that just because you have the antibodies does not mean you will have an autoimmune disease. There is no way to know just which disease the antibodies will manifest themselves in (if at all). They are far more prevalent in the elderly, women and people of African descent. Since I am none of those three demographics I must just be really unlucky;)
Until next time, stay well:)
Sunday, January 15, 2012
Questions are getting answered
I may be on holidays at the moment, but I have got to say that my mind is still firmly on Chicago. Saying that, I have downed tools for a little while and got some R and R and spent some quality time with the family. Today we went to the movies, I managed to watch a good deal of the cricket and we went out for dinner.
You might notice that my blogging frequency has been down in the last week. But I have still been busy which is why at 11.15PM I am sitting alone, while all others are tucked up in bed, writing this. I have been in regular contact with Chicago, and we had a small drama, the records department at North Western managed to lose my x-rays.
Don't panic, it was just the CD's, and luckily I had copies of the images saved to my laptop. So diligently I went out and bought some blank CD's, came home and burned the images onto them. The next day I was already to take them to the post office for the long voyage to the good ol' US of A when I got an e-Mail from Paula saying she'd managed to retrieve the images.
Phew, crisis averted. Paula is fast earning legendary status in my book for the friendliness and efficiency she has processed my case, answered all my questions and the promptness of her responses. However, for losing my x-rays North Western Hospital has earned itself a black mark. Ooh, that sounds bad. Not really. When it comes to hospitals I am a hard task master, and it is really just a reminder to myself to have my own personal file with everything in it.
All my flights and accommodation are now booked too. I will be flying Virgin to Chicago, leaving, and arriving on the 18th of February. Once there I will be staying at the Seneca Hotel, which by all accounts looks very nice. I don't know for sure as I've never been, but it is the hotel the hospital recommended, so that's a good start.
The hardest part about organising travel and accommodation was the travel insurance. Have you ever tried organising travel insurance overseas when you have not one, but two pre-existing conditions they are worried about? Your purpose for travel is to receive medical treatment and oh yeah, your immune system is going to take a hit, and the country you are going to is the most expensive and difficult to insure? Well, I just have and let me tell you it is a pain it the #$%&. What is more annoying is the person that I am dealing with at the insurance company is not a doctor, nurse or any other suitable qualified medical practitioner. They are simply an administrative coordinator, so you have to explain everything as though you were talking to a five year old.
Lastly, I have almost worked out someone to come and spend some time with me while I am going through the SCT. I talked with someone about whether it was advisable to have a support person through the ordeal. This person had been through an SCT and said you could do it by yourself, but it is really hard. I have chatted with my mum and wife and aside from the first two weeks, which is just testing and appointments they will be tag teaming to keep me company.
My mind is starting to gear towards what to pack. I leave in just over a month, and I'm sure that time will fly by. Organising everything has not been easy, but that has been a good thing too. Working hard to make this happen has not just affirmed my resolve that I want to do this, but I also need to do it. Leave no stone unturned. For me the worst outcome is to never try and never know. Until next time, stay well:)
You might notice that my blogging frequency has been down in the last week. But I have still been busy which is why at 11.15PM I am sitting alone, while all others are tucked up in bed, writing this. I have been in regular contact with Chicago, and we had a small drama, the records department at North Western managed to lose my x-rays.
Don't panic, it was just the CD's, and luckily I had copies of the images saved to my laptop. So diligently I went out and bought some blank CD's, came home and burned the images onto them. The next day I was already to take them to the post office for the long voyage to the good ol' US of A when I got an e-Mail from Paula saying she'd managed to retrieve the images.
Phew, crisis averted. Paula is fast earning legendary status in my book for the friendliness and efficiency she has processed my case, answered all my questions and the promptness of her responses. However, for losing my x-rays North Western Hospital has earned itself a black mark. Ooh, that sounds bad. Not really. When it comes to hospitals I am a hard task master, and it is really just a reminder to myself to have my own personal file with everything in it.
All my flights and accommodation are now booked too. I will be flying Virgin to Chicago, leaving, and arriving on the 18th of February. Once there I will be staying at the Seneca Hotel, which by all accounts looks very nice. I don't know for sure as I've never been, but it is the hotel the hospital recommended, so that's a good start.
The hardest part about organising travel and accommodation was the travel insurance. Have you ever tried organising travel insurance overseas when you have not one, but two pre-existing conditions they are worried about? Your purpose for travel is to receive medical treatment and oh yeah, your immune system is going to take a hit, and the country you are going to is the most expensive and difficult to insure? Well, I just have and let me tell you it is a pain it the #$%&. What is more annoying is the person that I am dealing with at the insurance company is not a doctor, nurse or any other suitable qualified medical practitioner. They are simply an administrative coordinator, so you have to explain everything as though you were talking to a five year old.
Lastly, I have almost worked out someone to come and spend some time with me while I am going through the SCT. I talked with someone about whether it was advisable to have a support person through the ordeal. This person had been through an SCT and said you could do it by yourself, but it is really hard. I have chatted with my mum and wife and aside from the first two weeks, which is just testing and appointments they will be tag teaming to keep me company.
My mind is starting to gear towards what to pack. I leave in just over a month, and I'm sure that time will fly by. Organising everything has not been easy, but that has been a good thing too. Working hard to make this happen has not just affirmed my resolve that I want to do this, but I also need to do it. Leave no stone unturned. For me the worst outcome is to never try and never know. Until next time, stay well:)
Friday, January 13, 2012
Idle Hands
If idle hands do the devils work, idle minds must be horrendous. My point is that whenever I have been sick, or in hospital with not much to do the mind can wander. And when you are already not at your best that can be terrible. You can start to dwell on the negative and before you know it you can enter a spiral of depression and the way out is steep and treacherous. Trust me. I know, I've been there.
So why is this an issue for me right now? Well if you have been reading my previous blogs you would know that I'm about to go to Chicago for anywhere up to three months for a stem cell transplant. My sole reason for going is the stem cell transplant and in between all the tests, appointments, treatments, scans etc, I'm going to have plenty of down time. Time for the mind to wander. Time for the mind to play tricks. Time for the mind to breed negativity and depression.
So how can I combat this? Well, some people may think that I am not taking this whole procedure seriously, but I am also looking at it as an opportunity to do some stuff. What that stuff is I don't quite know yet, but my theory is that if I can fill my head with positive, there will be no room for negative.
The first thing is, I have never been to Chicago, but I'm sure that there is plenty to do and see there, so in the gaps I hope to become a real tourist and do some sight seeing. Second, I have friends that live in the States, and although limited and small there may be an opportunity to travel.
I understand that some people may thin that I have my priorities all mixed up. But that is not the case. I have to look after my mental health as well as my physical health. Keeping my mind busy and active will help me stay positive throughout the ordeal. Until next time, stay well:)
So why is this an issue for me right now? Well if you have been reading my previous blogs you would know that I'm about to go to Chicago for anywhere up to three months for a stem cell transplant. My sole reason for going is the stem cell transplant and in between all the tests, appointments, treatments, scans etc, I'm going to have plenty of down time. Time for the mind to wander. Time for the mind to play tricks. Time for the mind to breed negativity and depression.
So how can I combat this? Well, some people may think that I am not taking this whole procedure seriously, but I am also looking at it as an opportunity to do some stuff. What that stuff is I don't quite know yet, but my theory is that if I can fill my head with positive, there will be no room for negative.
The first thing is, I have never been to Chicago, but I'm sure that there is plenty to do and see there, so in the gaps I hope to become a real tourist and do some sight seeing. Second, I have friends that live in the States, and although limited and small there may be an opportunity to travel.
I understand that some people may thin that I have my priorities all mixed up. But that is not the case. I have to look after my mental health as well as my physical health. Keeping my mind busy and active will help me stay positive throughout the ordeal. Until next time, stay well:)
Wednesday, January 11, 2012
It Makes my Blood Boil
I asked myself recently if I thought I'd ever run out of things to blog about. Quite simply, no. Not for a long time anyway. Constantly I am getting inspiration from my own experiences, reading medical journals or other peoples blogs and with my stem cell transplant looming, my posts will become more of a diary. But one source of material I find I recently use is what people talk about on the medical forums.
One topic that consistently comes up in the cystinuria forum is people with kidney stones being refused pain medication because they are being labeled as 'drug seekers'. And that makes me angry. If you've ever had a kidney stone you would know why. They hurt. They hurt a lot. Being a man I cannot compare, but I'm told the pain is equivalent to child birth.
Now I get that kidney stones are an easy symptom for 'drug seekers' to mimic. I get that people with chronic kidney pain may become addicted as a result. But to leave people in that sort of pain is barbaric and unforgivable. I will elaborate.
Nine out of ten times these people who suffer from cystinuria can prove they have a chronic kidney condition that gives them an insane amount of kidney stones. Yet, ER and primary care doctors constantly refuse to treat their pain. My point being that if you can prove you have a disorder like this you should be treated. In my hey day, before I was receiving proper care for my kidney disease (And I freely admit that was my fault) I grew a one centimeter stone in three months.
And even though I admit that a chronic kidney stone patient could become addicted to pain meds (because of the nature of the pain treatment) I believe that the pros and cons of addiction to pain relief for a bona fide medical condition need to be weighed up and addiction, or feeding addiction is a small price to pay to make sure a patient is pain free.
If there are any doctors that a reading this and would like to weigh in I would love to hear. I would also like to take the opportunity to say that I have never been addicted to pain meds. Whilst I believe some people have a penchant for them, I am the opposite. I don't like the way they make me feel and when the pain goes away naturally I enjoy seeing the back of them. I'd also like to add that I have never found myself being denied meds on suspicion I might be a 'drug seeker'.
I'm going to finish with a story from the cystinuria facebook forum. A doctor told a lady with stone pain that it was similar to mild menstrual cramp and analgesic pain meds weren't required. Well if that's the case I'm glad I'm not a girl. Severe cramps must be agony.
Next time I'll get back talking about my SCT. Until then, stay well:)
One topic that consistently comes up in the cystinuria forum is people with kidney stones being refused pain medication because they are being labeled as 'drug seekers'. And that makes me angry. If you've ever had a kidney stone you would know why. They hurt. They hurt a lot. Being a man I cannot compare, but I'm told the pain is equivalent to child birth.
Now I get that kidney stones are an easy symptom for 'drug seekers' to mimic. I get that people with chronic kidney pain may become addicted as a result. But to leave people in that sort of pain is barbaric and unforgivable. I will elaborate.
Nine out of ten times these people who suffer from cystinuria can prove they have a chronic kidney condition that gives them an insane amount of kidney stones. Yet, ER and primary care doctors constantly refuse to treat their pain. My point being that if you can prove you have a disorder like this you should be treated. In my hey day, before I was receiving proper care for my kidney disease (And I freely admit that was my fault) I grew a one centimeter stone in three months.
And even though I admit that a chronic kidney stone patient could become addicted to pain meds (because of the nature of the pain treatment) I believe that the pros and cons of addiction to pain relief for a bona fide medical condition need to be weighed up and addiction, or feeding addiction is a small price to pay to make sure a patient is pain free.
If there are any doctors that a reading this and would like to weigh in I would love to hear. I would also like to take the opportunity to say that I have never been addicted to pain meds. Whilst I believe some people have a penchant for them, I am the opposite. I don't like the way they make me feel and when the pain goes away naturally I enjoy seeing the back of them. I'd also like to add that I have never found myself being denied meds on suspicion I might be a 'drug seeker'.
I'm going to finish with a story from the cystinuria facebook forum. A doctor told a lady with stone pain that it was similar to mild menstrual cramp and analgesic pain meds weren't required. Well if that's the case I'm glad I'm not a girl. Severe cramps must be agony.
Next time I'll get back talking about my SCT. Until then, stay well:)
How do I Feel About it All?
There is so much running through my head at the moment it is not funny. I am literally having to take time out every day to do a self mental evaluation, and the good news is right now, I'm doing fine. I don't know if it is experience or something that I am just good at but when it comes to stuff like this I seem to be all right.
But there are a million and one things running through my head on any given day. How do I get there? What should I bring? Where should I stay? What do I have to do before I go? How do I get around Chicago? What can I do when I have down time? How can I communicate with back home? What are the people going to be like? And many more.
Then there are also the 'what ifs'. What if something goes wrong with the treatment? What if I do not qualify for the treatment? What if I have trouble travelling? What if something unrelated goes wrong? What if something happens back home?
The 'what ifs' seem bad, but honestly I have managed to put them out of my mind so far. A 'what if' scenario is something I can't control. If it happens it happens, and if it does I'll just have to deal with it as best I can. What is bothering me most at the moment is logistics when it comes to a support network.
I live in Melbourne Australia. The trial is based in Chicago USA. A one way ticket is about $15 hundred and takes about 22 hours to fly there. One thing I don't want to do is do it alone. I will if I have to, but if/when things start to get tough it is nice to have one of your nearest and dearest with you to lend moral support.
So who could give me support? My wife would love to and would be fully prepared to, but then who looks after the kids? It is unfair to leave the kids parentless for two months. Like most mums and dads I value the well being of my kids before myself so my wife will have to stay home for the majority. That lead to the question of why not bring the kids too? First, two months is a long time to pull them out of school and second, while I'm immune suppressed it is strongly advised to have no contact with children. While we love our kids and hygiene is something we teach them from a very young age, it is something they do not fully appreciate, understand or practice until they are in their teens.
There is my mum and dad. They have been more than supportive of me through this, but could I ask them to come to Chicago for two months. It is a long way to go to be somewhere you don't know anyone, and they too have commitments and obligations they must fulfil. Lastly, other friends and family. A number of people have volunteered to come over and help me but like I said, 22 hours and $15 hundred.
In all I should be ok. If you look at the schedule the first two weeks are just appointments and testing. I don't need anyone for that and after that I should be able to get someone to spend some time with me. Next time I'll start addressing some of the other issues I have with my trip and how I feel about it. Until then, stay well:)
But there are a million and one things running through my head on any given day. How do I get there? What should I bring? Where should I stay? What do I have to do before I go? How do I get around Chicago? What can I do when I have down time? How can I communicate with back home? What are the people going to be like? And many more.
Then there are also the 'what ifs'. What if something goes wrong with the treatment? What if I do not qualify for the treatment? What if I have trouble travelling? What if something unrelated goes wrong? What if something happens back home?
The 'what ifs' seem bad, but honestly I have managed to put them out of my mind so far. A 'what if' scenario is something I can't control. If it happens it happens, and if it does I'll just have to deal with it as best I can. What is bothering me most at the moment is logistics when it comes to a support network.
I live in Melbourne Australia. The trial is based in Chicago USA. A one way ticket is about $15 hundred and takes about 22 hours to fly there. One thing I don't want to do is do it alone. I will if I have to, but if/when things start to get tough it is nice to have one of your nearest and dearest with you to lend moral support.
So who could give me support? My wife would love to and would be fully prepared to, but then who looks after the kids? It is unfair to leave the kids parentless for two months. Like most mums and dads I value the well being of my kids before myself so my wife will have to stay home for the majority. That lead to the question of why not bring the kids too? First, two months is a long time to pull them out of school and second, while I'm immune suppressed it is strongly advised to have no contact with children. While we love our kids and hygiene is something we teach them from a very young age, it is something they do not fully appreciate, understand or practice until they are in their teens.
There is my mum and dad. They have been more than supportive of me through this, but could I ask them to come to Chicago for two months. It is a long way to go to be somewhere you don't know anyone, and they too have commitments and obligations they must fulfil. Lastly, other friends and family. A number of people have volunteered to come over and help me but like I said, 22 hours and $15 hundred.
In all I should be ok. If you look at the schedule the first two weeks are just appointments and testing. I don't need anyone for that and after that I should be able to get someone to spend some time with me. Next time I'll start addressing some of the other issues I have with my trip and how I feel about it. Until then, stay well:)
Tuesday, January 10, 2012
My Transplant Schedule
Here is the schedule for my stem cell transplant. Provided all goes well this is what I will be doing whilst I'm in Chicago. Reading through it, it fires up a lot of emotions. I might talk about them next time. Stay well:)
Schedule for Andrew PRice
Galter Pavilion address is: 201 East Huron Street
Please call to
pre-register for your tests at XXX-XXX-XXXX.
Please bring a list
of your current medications, a picture ID and your insurance card with you.
Monday, February
20, 2012
Lab Tests
Walk in – no
appointment time
Laboratory
Services
18th
Floor, Galter Pavilion.
Chest x-ray
Walk-in
Radiology
4th
Floor, Galter Pavilion
Tuesday, February
21, 2012
11:00 a.m.
Meeting with
XXXXXXX, RN
3rd
Floor, Galter Building, Lobby
1:00 p.m.
Vein Check
Blood Center
Galter Pavilion,
2nd Floor
2:30 p.m.
EMG/NCV
Neurotesting
7th
Floor, Galter Pavilion
Please note: Don not use any lotions, crams,
moisturizers or oils on the body prior to this test. Please make sure they perform the test on all four
extremities.
Wednesday, February
22, 2012
11:00 a.m.
Appointment with
Dr. Michael Ison
Transplant ID
Arkes Building,
676 North St. Clair Street, 9th Floor, Suite 940
1:20 p.m.
Appointment with
Dr. Richard Burt
Medical
Specialties Clinic
Galter Pavilion,
14th Floor
3:30 p.m.
Dental
Appointment
Dental Center
Galter Pavilion,
2nd Floor
Please give the
dentist your enclosed dental form to fill out
Friday, February
24, 2012
9:00 a.m.
Appointment with
Dr. Jeffrey Allen
Neurology
20th
Floor, Galter Pavilion
Please be sure he
does muscle strength grading-neuro forms
Monday,
March 5, 2012
7:30 a.m.
Please report to
the 2nd Floor Information Desk of Feinberg Pavilion, 251 East Huron
Street to be admitted for Chemo Mobilization.
Thursday,
March 15, 2012
Nothing to eat or
drink after midnight. If your
doctor or nurse has prescribed medication(s) for you to take, please do so with
sips of water.
7:00 a.m.
Temporary
Catheter Line Placement
Interventional
Radiology
Galter Pavilion,
4th Floor
Once the line is
placed, please go to the Blood Center, 2nd Floor, Galter Pavilion to
have lab tests and begin stem cell harvesting.
Friday,
March 16, 2012
Additional day
for stem cell harvesting if needed
Blood Center,
Galter Pavilion, 2nd Floor
They will give
you instructions and time.
Monday,
March 19, 2012
IVIG
At 8:00 a.m.
please call the Blood Center at XXX-XXX-XXXX and give them your weight. They will give you the time for your
IVIG appointment. The Blood Center
is in the Galter Pavilion, 2nd floor.
Monday,
April 2, 2012
12:00 p.m.
PICC line
placement
Interventional
Radiology
Galter Pavilion,
4th Floor
Tuesday,
April 3, 2012
7:30 a.m.
Please go to the 2nd floor Information Desk in the Feinberg Pavilion to
be admitted for stem cell transplantation.
Sunday, January 8, 2012
Stem Cell Transplant
I have had a fair few questions about my stem cell transplant recently. And rightly so. A stem cell transplant can mean a number of things from deriving a small amount of stem cells from fat tissues purely for cosmetic purposes all the way up to a total bone marrow transplant. Here are the details of what I will hopefully be going through.
The full name of my procedure is an autologous hematopoietic stem cell transplantation. Definitions are as follows:-
Autologous:- Derived or transferred from the same individuals body*
Hematopoietic:- The formation of blood or blood cells in the body*
Stem Cell:- An unspecialised cell that gives rise to a specialised cell, such as a blood cell*
Transplant:- To transfer (tissue or organ) from one body or body part to another*
*Definitions from www.thefreedictionary.com
So, in short, the procedure is the donation of blood stem cell from myself to myself. But it is a fraction more complicated than that. The following diagram gives a brief explanation of the process:
The hard part comes in three sections. There is the first round of chemotherapy that is used to stimulate the growth of stem cells so they can harvest as many they can. Also have to have Neupogen injections for one week to assist in this endeavor. Both the chemo and neupogen are not without their side effects, which is the fun part.
Second, is the intensive round of chemotherapy. We all know someone who has had cancer and the difficulty that they have had. Aside from me not having cancer it really is not much different. The iidea of this round of chemo is to completely destroy all white blood cells, so when the stem cell are reintroduced they create a brand new immune system and there is nothing left to copy. If I simply re-grew a copy of my old immune system I would still have the antibodies that were attacking my nervous system.
Third, after the second round of chemo I'll be completely neutropenic. Meaning I will have no immune system and unable to fight off infection. Even a common cold could be life threatening, so I have to be really careful for the next few months to make sure I don't catch anything. Even though they have a timeline for when they think you should reach certain milestones, what really dictates when you reach those milestones is your white blood count as that is the best indication of the strength of your immune system.
Next time I will post my transplant schedule, so all going to plan, you will be able to know when I will be facing each stage. Until then, stay well:)
The full name of my procedure is an autologous hematopoietic stem cell transplantation. Definitions are as follows:-
Autologous:- Derived or transferred from the same individuals body*
Hematopoietic:- The formation of blood or blood cells in the body*
Stem Cell:- An unspecialised cell that gives rise to a specialised cell, such as a blood cell*
Transplant:- To transfer (tissue or organ) from one body or body part to another*
*Definitions from www.thefreedictionary.com
So, in short, the procedure is the donation of blood stem cell from myself to myself. But it is a fraction more complicated than that. The following diagram gives a brief explanation of the process:
The hard part comes in three sections. There is the first round of chemotherapy that is used to stimulate the growth of stem cells so they can harvest as many they can. Also have to have Neupogen injections for one week to assist in this endeavor. Both the chemo and neupogen are not without their side effects, which is the fun part.
Second, is the intensive round of chemotherapy. We all know someone who has had cancer and the difficulty that they have had. Aside from me not having cancer it really is not much different. The iidea of this round of chemo is to completely destroy all white blood cells, so when the stem cell are reintroduced they create a brand new immune system and there is nothing left to copy. If I simply re-grew a copy of my old immune system I would still have the antibodies that were attacking my nervous system.
Third, after the second round of chemo I'll be completely neutropenic. Meaning I will have no immune system and unable to fight off infection. Even a common cold could be life threatening, so I have to be really careful for the next few months to make sure I don't catch anything. Even though they have a timeline for when they think you should reach certain milestones, what really dictates when you reach those milestones is your white blood count as that is the best indication of the strength of your immune system.
Next time I will post my transplant schedule, so all going to plan, you will be able to know when I will be facing each stage. Until then, stay well:)
Saturday, January 7, 2012
Why are doctors conservative?
I caught up with an old friend for the first time in ages last week. It would have been almost ten years and wow, how things have changed. Ten years ago if we arranged to catch up we probably would have met at a cafe, restaurant or pub. Now we met at a playground so the kids could run around and we could have at least five minutes uninterrupted adult conversation before the inevitable scraped knee or "dad, can you push me on the swing?"
But it was really great to catch up. It had actually been so long that this guy had not only started a family since the last time I saw him, but he had put himself through medical school and was now of all things, a consultant neurologist. Inevitably, the conversation started to a medical field as we both shared a common interest, albeit from different angles. Him as a doctor, me as a patient.
Their was one really refreshing side to the conversation though. I genuinely felt as though I was discussing the topic as an equal, even when it came to discussing my personal situation. I don't know whether it was because we are friends, he has a respect for me intellectually as we both went to university together or that this is simply the style of medicine he wished to practice. I'd like to think that it is a product of all three. But the point is I felt like an equal.
As the conversation progressed the topic evolved to why doctors seemed to be more conservative in their treatment approach to what a patient would be? Apparently there are studies that show that patients are greater risk takers than doctors. I have done a search online for such articles, but have not found much. (admittedly, I did not look especially hard)
From this I derive two questions. Firstly, why are doctors more conservative? And second, who's right, doctor or patient? So why are doctors more conservative than their patients? As I've said before, when you have a chronic illness, it is with you 24/7. It does not take a holiday, it doesn't even take tea break. For the most part doctors only get a 15 minute snapshot of the disease in a clinical setting. It is not nearly enough to even gain a vague understanding of what is experienced by the patient. Coupled with the fact that medical students are taught an academic perspective to disease and not an empathic perspective means they really have no idea.
But they do have a great deal of contact with patients when they are undergoing a treatment. When I was in hospital for my brain surgery, I was visited by a number of doctors every day. During the six hour surgery there were four doctors present for the whole procedure. So they get a very good understanding of the trauma a patient goes through for each different type of procedure.
But unless you can weigh up the trauma of a procedure against the trauma of living with a disease, you are not qualified to answer that question. So who's right? Well both are right. So all the knowledge should be put on the table. All available options should be discussed, and then I believe the patient should make the decision. Doctors should also take into account the individual patients understanding of the disease and treatment options. If it seems like the patient is taking an intelligent risk the doctor should support that. It is the patients life. They should be the ones that make the ultimate decision.
I would also like to add that it is the patient who takes the ultimate risk. I understand that there is a burden to a doctor if something goes wrong. But every treatment, no matter how small has risk. If a doctor is not prepared to adversely affect a patient, no matter how hard they try to help, they should not be a doctor. Unfortunately, unforeseen tragedy is always going to be a part of medicine. But that should not stop us trying, because the surest way to lose is to not try at all. Until next time, stay well:)
But it was really great to catch up. It had actually been so long that this guy had not only started a family since the last time I saw him, but he had put himself through medical school and was now of all things, a consultant neurologist. Inevitably, the conversation started to a medical field as we both shared a common interest, albeit from different angles. Him as a doctor, me as a patient.
Their was one really refreshing side to the conversation though. I genuinely felt as though I was discussing the topic as an equal, even when it came to discussing my personal situation. I don't know whether it was because we are friends, he has a respect for me intellectually as we both went to university together or that this is simply the style of medicine he wished to practice. I'd like to think that it is a product of all three. But the point is I felt like an equal.
As the conversation progressed the topic evolved to why doctors seemed to be more conservative in their treatment approach to what a patient would be? Apparently there are studies that show that patients are greater risk takers than doctors. I have done a search online for such articles, but have not found much. (admittedly, I did not look especially hard)
From this I derive two questions. Firstly, why are doctors more conservative? And second, who's right, doctor or patient? So why are doctors more conservative than their patients? As I've said before, when you have a chronic illness, it is with you 24/7. It does not take a holiday, it doesn't even take tea break. For the most part doctors only get a 15 minute snapshot of the disease in a clinical setting. It is not nearly enough to even gain a vague understanding of what is experienced by the patient. Coupled with the fact that medical students are taught an academic perspective to disease and not an empathic perspective means they really have no idea.
But they do have a great deal of contact with patients when they are undergoing a treatment. When I was in hospital for my brain surgery, I was visited by a number of doctors every day. During the six hour surgery there were four doctors present for the whole procedure. So they get a very good understanding of the trauma a patient goes through for each different type of procedure.
But unless you can weigh up the trauma of a procedure against the trauma of living with a disease, you are not qualified to answer that question. So who's right? Well both are right. So all the knowledge should be put on the table. All available options should be discussed, and then I believe the patient should make the decision. Doctors should also take into account the individual patients understanding of the disease and treatment options. If it seems like the patient is taking an intelligent risk the doctor should support that. It is the patients life. They should be the ones that make the ultimate decision.
I would also like to add that it is the patient who takes the ultimate risk. I understand that there is a burden to a doctor if something goes wrong. But every treatment, no matter how small has risk. If a doctor is not prepared to adversely affect a patient, no matter how hard they try to help, they should not be a doctor. Unfortunately, unforeseen tragedy is always going to be a part of medicine. But that should not stop us trying, because the surest way to lose is to not try at all. Until next time, stay well:)
Friday, January 6, 2012
2012 -The Year Ahead
Well if you believe the Mayan calendar, 2012 will be the end of the world! Fortunately for me, I don't believe that. If I did, I certainly wouldn't be spending my final year of life recovering from an arduous and grueling stem cell transplant. And it is an overview of my 2012 that I plan on sharing with you today.
Well one thing is for certain, it is going to be an interesting and busy year. I am under no illusions, it is going to be tough. Really tough. But even with the nausea, vomiting, lethargy, hair loss, generally feeling like crap and all the other delightful side effects that come with chemotherapy and being neutropenic, I will have to consider it a wonderful year if the treatment works.
Mapping out the year for me is probably best if I go backwards. In October I have a goal. I need to be fit and healthy. At least well enough to travel across the world in an airplane. What is my goal I hear you ask? Well, if there was a sure fire sign that the world was coming to an end (which it isn't) it is that my brother is getting married!
After nearly 40 years of bachelorhood he is going to tie the knot with his significant other in the UK in October. I'm excited! And what makes it even more exciting is I'm yet to meet the lucky lady and their brand new son. I've always said that even though hospitals and medicine are a big part of my life I believe that that is not a reason for living. We live for the good things in life and October for me will be massive. As well as the wedding my wife and I are planning to take the kids around the world so it should be an amazing trip.
In all honesty it is really good timing. I will have had enough time to recover and prepare for the trip and during my stem cell transplant I will have something to look forward to as well as the obvious like seeing the kids after three months, or being able to sleep pain free or even being able to go for a run. (Now, now Andy. Keep it real. Don't get ahead of yourself.)
I think that brings us to the stem cell transplant. I will cover this in more detail later and then in insanely more details as I embark upon the journey. Suffice to say that it will be hard and intense. Whoever said it was about the journey not the destination never had a stem cell transplant. I'd love to be able to skip the next four months and wake up just in time for the good part. The healing. Sadly, that won't be the case, but whilst I'm in Chicago I do plan have at least a tiny bit of fun. It would be a shame to travel all that way to a place I've never been before and not spend at least one day seeing everything. I think it will also be important to give myself something right in the moment to look forward to. Sure, the long term gains are undeniable. But it is also nice to have short term goals to help with the here and now.
I think one of the things that is really important for me to share with you all is that although I am 99% certain to go to Chicago, there is still no absolute certainty I will make it into the trial, and I might be headed back to Australia with my tail between my legs. But I can't think like that. I need to stay positive and assume I will make it into the trial. If I don't I will cross that bridge when I come to it.
On other notes, my health is much bigger than just one treatment. The year has got off to a flying start with already one IVIG treatment and a kidney x-ray which came back clear of all stones! That is now six months. Lets hope that I can keep that up all year. I think/hope it may be a good year for the kidneys.
Well, that's a brief summary of my year ahead. It should be an interesting one. I'll keep you posted as I go. Until then, stay well:)
Well one thing is for certain, it is going to be an interesting and busy year. I am under no illusions, it is going to be tough. Really tough. But even with the nausea, vomiting, lethargy, hair loss, generally feeling like crap and all the other delightful side effects that come with chemotherapy and being neutropenic, I will have to consider it a wonderful year if the treatment works.
Mapping out the year for me is probably best if I go backwards. In October I have a goal. I need to be fit and healthy. At least well enough to travel across the world in an airplane. What is my goal I hear you ask? Well, if there was a sure fire sign that the world was coming to an end (which it isn't) it is that my brother is getting married!
After nearly 40 years of bachelorhood he is going to tie the knot with his significant other in the UK in October. I'm excited! And what makes it even more exciting is I'm yet to meet the lucky lady and their brand new son. I've always said that even though hospitals and medicine are a big part of my life I believe that that is not a reason for living. We live for the good things in life and October for me will be massive. As well as the wedding my wife and I are planning to take the kids around the world so it should be an amazing trip.
In all honesty it is really good timing. I will have had enough time to recover and prepare for the trip and during my stem cell transplant I will have something to look forward to as well as the obvious like seeing the kids after three months, or being able to sleep pain free or even being able to go for a run. (Now, now Andy. Keep it real. Don't get ahead of yourself.)
I think that brings us to the stem cell transplant. I will cover this in more detail later and then in insanely more details as I embark upon the journey. Suffice to say that it will be hard and intense. Whoever said it was about the journey not the destination never had a stem cell transplant. I'd love to be able to skip the next four months and wake up just in time for the good part. The healing. Sadly, that won't be the case, but whilst I'm in Chicago I do plan have at least a tiny bit of fun. It would be a shame to travel all that way to a place I've never been before and not spend at least one day seeing everything. I think it will also be important to give myself something right in the moment to look forward to. Sure, the long term gains are undeniable. But it is also nice to have short term goals to help with the here and now.
I think one of the things that is really important for me to share with you all is that although I am 99% certain to go to Chicago, there is still no absolute certainty I will make it into the trial, and I might be headed back to Australia with my tail between my legs. But I can't think like that. I need to stay positive and assume I will make it into the trial. If I don't I will cross that bridge when I come to it.
On other notes, my health is much bigger than just one treatment. The year has got off to a flying start with already one IVIG treatment and a kidney x-ray which came back clear of all stones! That is now six months. Lets hope that I can keep that up all year. I think/hope it may be a good year for the kidneys.
Well, that's a brief summary of my year ahead. It should be an interesting one. I'll keep you posted as I go. Until then, stay well:)
Tuesday, January 3, 2012
doctor vs patient funny
I don't know why but when I saw the bit with the patient laughing I laughed too. When I first got Kidney stones the docs kept wanting to touch my stomach and instantly I'd tense up because I'd find it so ticklish. Also, good advice for doctors, if you do a knee jerk test, stand to the side. Stay well:)
Monday, January 2, 2012
2011 in Review
Given all I've been through in my life, 2011 might have seemed like a fairly light year from a medical stand point. I mean if you think about it, the year before I had brain surgery and next year I will hopefully be having a stem cell transplant. From the outside looking in this year has paled in comparison.
But when you are inside, you do not necessarily see everything but you sure feel it. And honestly, I think that one thing makes 2011 a massive year for me. It is the year I feel I conquered my depression. Five years ago, the best I could possibly feel was numb, at worst, there would be a whole cocktail of negative emotions. Anger, sadness, helplessness to name but a few.
Now I am experiencing a whole range of emotions. I still feel the negative ones sometimes, but that is OK. Part of being human is to feel negative emotions from time to time, but I also feel the good ones. I feel the positives in life, and as a result I actually look forward to and enjoy so much more. I am constantly having ideas and the drive to put them in to practice. If I was still depressed I would never have got off my derriere, found support groups for my conditions, found out about SCT and got myself on the trial.
Although I have won the war, I have to be aware that the demon is not slain and vanquished never to return. He is merely locked away in a deep dark dungeon. Escape is possible, and although at this current time unlikely, I still have to be constantly vigilant and aware.
So what else happened in this 'light' year? There were 13 admissions to the day oncology ward at Cabrini hospital to receive IVIG, 2 hospitalisations for kidney stones at Epworth Eastern and Cotham Private, 1 trip to Box Hill Emergency (for a cut finger of all things, see I'm a Clutz!!!!!) and countless trips to various doctors and x-rays, CT scans, ultrasounds, blood and urinalysis and other fun tests. Mixed in with this were a bunch of other stuff like physio, chiro, occupational therapist, PT and yoga lessons. And who said being sick wasn't a full time job?
So last year for me was not 'light'. But when it comes to my health I don't think such a thing can exist. I have made mistakes in the past and have learnt the hard way to take my health very seriously. I only have one body, one mind and one life. This is not a dress rehearsal, and as long as I have these diseases, I will spend as much time as it takes working out how to beat them. I believe that it is possible because I beat my depression. I believe that the endeavour is worth it. I believe I'm worth it.
Well, that is my year that was. Next time I will write about the year that is. What I can expect. What I want to achieve and what could go wrong. Until then, stay well:)
But when you are inside, you do not necessarily see everything but you sure feel it. And honestly, I think that one thing makes 2011 a massive year for me. It is the year I feel I conquered my depression. Five years ago, the best I could possibly feel was numb, at worst, there would be a whole cocktail of negative emotions. Anger, sadness, helplessness to name but a few.
Now I am experiencing a whole range of emotions. I still feel the negative ones sometimes, but that is OK. Part of being human is to feel negative emotions from time to time, but I also feel the good ones. I feel the positives in life, and as a result I actually look forward to and enjoy so much more. I am constantly having ideas and the drive to put them in to practice. If I was still depressed I would never have got off my derriere, found support groups for my conditions, found out about SCT and got myself on the trial.
Although I have won the war, I have to be aware that the demon is not slain and vanquished never to return. He is merely locked away in a deep dark dungeon. Escape is possible, and although at this current time unlikely, I still have to be constantly vigilant and aware.
So what else happened in this 'light' year? There were 13 admissions to the day oncology ward at Cabrini hospital to receive IVIG, 2 hospitalisations for kidney stones at Epworth Eastern and Cotham Private, 1 trip to Box Hill Emergency (for a cut finger of all things, see I'm a Clutz!!!!!) and countless trips to various doctors and x-rays, CT scans, ultrasounds, blood and urinalysis and other fun tests. Mixed in with this were a bunch of other stuff like physio, chiro, occupational therapist, PT and yoga lessons. And who said being sick wasn't a full time job?
So last year for me was not 'light'. But when it comes to my health I don't think such a thing can exist. I have made mistakes in the past and have learnt the hard way to take my health very seriously. I only have one body, one mind and one life. This is not a dress rehearsal, and as long as I have these diseases, I will spend as much time as it takes working out how to beat them. I believe that it is possible because I beat my depression. I believe that the endeavour is worth it. I believe I'm worth it.
Well, that is my year that was. Next time I will write about the year that is. What I can expect. What I want to achieve and what could go wrong. Until then, stay well:)
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