Well, today is world rare disease day.  Today is all about creating awareness for people with rare diseases.  And what do we want?  Money?  No.  Commitment?  No.  Right now all we want is for you to like their Facebook page so we can draw attention to the cause of all rare diseases.  Take it from me, it can feel pretty lonely having a rare disease, but we are not alone and here is why:-

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.

With so many sufferers it is time we made a stand and were noticed.  By liking their Facebook page you can help make a statement to governments, insurance companies, pharmaceutical companies, medical researchers etc...  That these people are not alone and cannot be ignored.  You can like the Facebook page by clicking on the link below.  It will take you 30 seconds.

http://www.facebook.com/globalgenesproject

Stay well:)

Chi Tour

Some of the highlights of my tour of Chicago.  I really like the snippet I got of the el.  Stay Well:)

Update

Since I normally write about all things medical, it is nice to switch from a tourist blog and have something to report to you on my treatment.  I talked to Paula today and most of the tests that had been done were back in.  On the positive, the neurologist had signed off on CIDP so from a disease point of view I've got the green light.

However, on the not so positive side one of my test results raised a red flag.  I have not researched it yet so I am not sure if the result was positive, negative, elevated or whatever, all I know is that it requires further investigation.  So tomorrow I am going for a bone marrow biopsy to check that I don't have a myeloma.

Now I guess the big question for me is should I be worried?  At the moment I don't think so.  I have only talked to Paula and she could only answer most of my questions, the rest will have to wait for Dr Burt.  It is my understanding that many CIDP patients test positive for this test (which is called Serum Protein Electrophoresis or SPEP) so the further test is just a precaution.

One thing I am finding kind of strange is that I only heard of the news an hour ago and I am in for the test tomorrow morning.  Normally I get the go for a procedure and the test happens about a month from now. It gives me time to process all of it, do my research and prepare and this time I have all of 18 hours to prepare.

Normally I whinge about the wait, but this time I am on the polar opposite side of the fence.  I am almost being rushed.  But there is no way I am going to complain about it.  This is way more preferential than the wait.  So forgive me for rushing off, I have to go and do some work.  Stay well:)

Thank you

A big thank you to every one who has wished me well.  Whether it be by phone, e-Mail, card, on my blog, face book, twitter, google + or anything, I have really appreciated it.  I apologise for not replying to everyone in person but your messages have not gone unnoticed.  As I have said before in my blog going through a medical procedure can feel pretty lonely, especially when you are in a foreign city and the well wishes certainly do give me warm and fuzzy feeling.  So, thank you to all.  Stay well:)

I don't get it

Here in the USA they love to advertise prescription pharmaceuticals.  I don't have a problem with that, I just don't get it.  Now I have to admit the ads are pretty lame, showing off a person who now has an amazing return to brilliant health due to this wonder drug.  What I don't get if that to avoid a law suit they have to go through all the side effects.  About two thirds of the ad is taken up saying how the drug could kill you, cripple you or turn you suicidal.  There has to be a better way to market a product.  An example is below.  Stay well:)

Tour and Adler

I have been busy.  Chicago is a big city and I figured that the best way to see as much as possible was to take a bus tour around the city.  So about Sunday lunch time I got on a bus driven by Leon for a four hour tour of the Windy City.

We started off heading south.  We saw lots of magnificent buildings etc.  I wish I could tell you more about it, but the guide talked so much I couldn't take it all in.  We saw the home base ball stadium of the White Sox, the university of Chicago, Barrack Obamas home and all the museums.

We had a short break before we headed north where we saw much more of the city, Harpo studios, the home baseball ground of the Cubs and Lincoln Park.  We then had a quick stop at the Chicago conservatory before we headed home.  The tour was ok, but if I didn't get it free with the Go Chicago card I would have felt that the $40 cover excessive.  I didn't think it was that good.

That night I was invited out again by Abby, to her house  for dinner and to watch the Oscars.  Again I overwhelmed by the generosity and warmth of the people here.  It is not easy coming to a new town all by yourself, but when people are so willing to let you into their house it is so much easier.

The next day I had a wonderful outing when I indulged myself into one of my hobbies and took myself off to the Adler Planetarium.  It was great.  I saw a very fun and creative show on deep space, a 3D movie on the Sun, exhibits on Apollo, telescopes, astronomical observations through history, living in space the solar system and many more.  Although it was great to see all these exhibits and take my time enjoying them I couldn't help thinking how much my son would love to see this stuff.  If I get to bring them back for my sixth month evaluation we will definitely pay this place a visit.

Well tonight is a stay home night while I charge my stimulator.  It will give me a chance to figure out what I'm going to do tomorrow.  Until then, stay well:)

The Waiting Game

Well I have officially finished the testing, now all I am doing is waiting for Paula to call me with my test results or the hospital to ask me in for more tests.  All being well I will not need to go back until the sixth of March for chemo mobilisation.  Until then I plan on using my time to see this truly majestic city and hopefully experience some of its magnificent culture.

On another note, I have to say it can be lonely at times.  Experiencing a new city would be so much more fun if I had someone to share it with.  I miss my wife and I miss my kids and I look forward to talking to them at the end of the day and telling them about what I had seen and done.  Well for now with the medical stuff in a sort of hiatus, I guess my blog will turn more into a travel journal as I experience Chicago.

Yesterday I had a busy day.  I have been amazed at the friendliness of all the people here from friends, to friends of friends, hotel and hospital staff and complete strangers, so getting around has been a breeze.  In the morning I went to visit an old friend and her family.  It was fantastic to catch up band we had a wonderful chat about all things past and present.

In the afternoon I took myself off to the top of the John Hancock centre.  It is home to the worlds highest ice skating rink but I decided against partaking in that activity.  The views up the top were magnificent, as shown in the pictures in my last post.  If there was one positive about not having my family here it was that I could take my time and really take in the sights and listen to the David Schwimmer commentary.  My kids like to rush around somewhere like that in less than 60 seconds and normally I have to follow.  But yesterday I could take my time.  However, it is but one little luxury and I would gladly trade it in to have them with me.

Following that, I was picked up by some friends who I found out lived in Chicago and we went out for Thai food.  Again, I can't stress how nice the people here have been.  Today I am planning on doing a bus tour of the windy city.  I'll be sure to let you know what it is like.  Until then, stay well:)

John Hancock Building

I had a great day today, but I will tell you more about it tomorrow.  For now, here are some pictures from the top of the John Hancock building.

Looking West

Looking West

Looking South

Looking South East at Navy Pier

Centre Bottom is the Seneca Hotel, where I am staying

Looking North

Building shadows across the water

Stay well:)

It's cold today

If my kids were here today they would have gone nuts!  When I woke up this morning and looked out of the window it was snowing.  The last time that I saw real snow was back in 2002.  My wife and I were on our honeymoon and we went to Niagara Falls on a bus tour.  When we woke up in the morning there was a light dusting of snow on the ground and for some reason the tour guide was extremely apologetic about the awful weather.  I don't think she really understood that the majority of Aussie tourists on the bus rarely saw snow and we were all running around outside like kids in a toy store having a great time.

I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing.  However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.

Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors.  It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests.  The bottle they provided here was so much easier to use and it didn't leak either.  The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.

After the drop off, it was time to see Dr Allen, the neurologist.  Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals.  Still everyone was extremely nice, something some service orientated staff in Australia could learn.  After that it was time to see the doctor.

He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT.  He really wanted to find out two things for Dr Burt.  First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary.  After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.

We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse.  Unfortunate, but understandable.  I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks.  Anything more than that is a bonus.

Well, that is about it for me today, until next time, stay well:)

A defining moment

You know what?  I was diagnosed with cystinuria in 1994.  In 2000 I was diagnosed with CIDP.  So technically I have suffered from those diseases for 18 and 12 years respectively.  In that time, aside from my brother (who also suffers from cystinuria) I have not met one other person with either of the illnesses that I have.  I guess that is one of the reasons that they both fall into the category of rare diseases.

But that all changed last Wednesday when I met Keith.  Keith is a great bloke who has just finished going through the stem cell transplant process for CIDP and is currently on his way home for a little r and r.  His story is quite compelling.  He was in the airforce, and about 9 years ago in the post 9/11 era anthrax was all the scare.  As an enlisted man he was made to have the vaccine, which probably caused his CIDP.

Meeting someone for the very first time that had the same disease that I did was as the title suggests, a defining moment.  Having a rare disease can be a really lonely and scary experience.  And although I have conversed with many fellow sufferers on the internet, there is something about meeting someone with the same disease as you that makes you feel a little less alone and makes the disease feel a little less scary.

Keith and I had a good chat about a lot of things from our backgrounds to the disease we share.  What was really great for me was to talk to him about his experience with his SCT, although I do think that some of it may be a little unrealistic as I got the impression that Keith breezed through the process much easier than most people in the program.  Still, it gave me a great deal of confidence.

Well Keith, it was a real pleasure meeting you.  Best of luck with the recovery, I look forward to staying in touch and seeing how you are doing.  I was thinking too, if you are struggling to find something to do in your post CIDP life, maybe you could try for a spot in the US team to the London olympics;)

Until next time everyone, stay well:)

The Seneca Hotel

A glimpse of where I am staying.  Stay well:)

How was my day

You know, I gave it some thought and realised that my schedule is fraught with danger.  The appointments are actually quite close together and if the first one is late, it could throw out my whole day, bouncing around from late appointment to late appointment.  Fortunately, the day went really smoothly and again was very productive one.

I started off with a visit to the infectious disease expert, Dr Ison.  One thing about North Western is they are so thorough it is borderline obsessive compulsive.  Again I was asked to fill out some paperwork and check over the same information to check that I am really me.  One thing I find funny is that the first question on the form is about insurance.  I have to admit that the hospital and its facilities are probably the best I've ever seen, but I feel that those facilities might be out of reach without the proper insurance or finances.

After the forms a nurse showed me through to a consulting room where they took my vitals and quizzed me about why I was here to see Dr Ison, after which I was left by myself to await the good doctor.  The next people who came into the room were the pharmacy people who wanted to write down my entire list of medications that I take on a day to day basis.

They then left and once again I was left by myself until Dr Ison came in.  He was a nice man and we got straight down to business.  Dr Burt was worried about the complications my brain stimulator might have on the transplant.  Apparently implanted medical devices can harbour bacteria which could be a problem when you have no immune system.  His main concern was that I would have wires exposed through the skin and since I don't he really wasn't worried.  Personally, this for me was a huge relief.  I had been worried about the implications because if an infection did manifest itself in my stimulator, it would have a short track right to the middle of my brain.  It is still a factor for me, but at least now I am much more comfortable with it.

After then it was back to laboratory services where this time they actually had my order.  I thought seeing that I had a bunch of blood work done back home in Australia they wouldn't need that much.  I was wrong.  I think there were actually 28 tubes.  I had a great nurse and we got straight into it.  After five tubes we were still going strong.  After ten things were starting to slow down, and about the twenty mark we were really starting to struggle.

With just four tubes to go the vein dried up and alas I had to get stuck again.  At least I have two arms so it was off to the other side and the rest was a breeze.  The other great thing about it was I didn't have to wait long so I had time to go to the cafeteria for a quick bite before I finally got to go see the legend, Dr Burt.

Now I hate putting doctors up on a pedestal like that.  I believe that doctors are people too and we need to test them to make sure that they are doing their job properly.  But Dr Burt does fit the mould of legend.  He is not just practicing medicine, he is writing a whole new chapter of his own.  The work he is doing has the potential to help a lot of people in the future.  However, doctors are people too and can have bad days and make mistakes.  As a patient I believe that you have an obligation to make sure a doctor is giving you the best care available.

In Dr Burt's case I don't think there will be a problem.  He seemed extremely knowledgeable and was very personable and engaging.  Don't you just hate it when someone is that great in every way?  He got the ball rolling by telling me about his trip down under and his little sojourn down the great ocean road.  If you reading this Dr Burt, the Victorian Police department thanks you for your kind donation;)

What people said about him being fast was also true.  Don't get me wrong he was thorough, but after Paula had taken my vitals (again) he came in and did his thing and left.  I had questions to ask him, most of which we covered in the main part of the consultation but I only just got my last question in while he had one foot out the door.  I feel quite comfortable being under his care.

Given the mix up of the first day, I have to say that the hospital has got an A+ for the last two days.  Right now I have the joyful task of a 24hr urine test, which has rendered me pretty much hotel bound for the day.  I have to keep the sample refrigerated too, so it is sitting on the second shelf of my fridge next to my water bottle.  Man I hope I don't make a mistake:0

Until next time, stay well:)

My daily stroll

I have been walking to the hospital every day so far and to tell the truth I am quite enjoying it, so I thought I would video it and share it with you all.  According to google maps it is 0.4 miles and should take 8 minutes.  It took me nearly double that.  I hope you enjoy my ramblings.  Stay well:)

A good day

Wow, I have so much to write about I really don't know where to start.  I think I will save my more quirky observations for next time and just tell you about my day.  And it was a good day relatively speaking.  Read on, I will explain.

Actually, I should have titled it a really good day.  I started off meeting Paula in the hospital lounge.  It seemed a bit odd meeting in the lounge, but in hindsight I have to say it was great.  It was really nice to talk about what is up coming in an informal environment.  I had also psyched myself up to talk about the less than perfect day I had the day before, but it was unnecessary.  Paula mentioned it first, and the elephant in the room had vanished.  From there we we free to talk about everything and anything stem cell related.

My next appointment was with the blood centre for a vein check.  In all honesty I have to say that it was probably unnecessary although appreciated.  I thought that they would check my veins for access or something, but no.  It was just a meet and greet and a quick tour of the facility but very welcome.  In a previous post I said that it would be great if you could a tour of a facility pre surgery and this is exactly what this was.  Next time I go back I will know exactly where I am going and what is happening.  It was very well appreciated and will make my next trip there much, much easier.

My last appointment was why I had a good day relatively speaking.  Please don't get me wrong, the staff were fantastic, everything was punctual and everything was done to make me feel as comfortable as possible.  But nerve conduction studies suck.  My fellow CIDP readers would understand.  And this was the most thorough exam I had ever had.  I was there for over an hour getting electrocuted but it was necessary and when that is the case you just have to put up with it.

However, the best part of the day was still to come but I am going to keep you in suspense and tell you about that next time because I'm tired and I want to go to bed.  Until next time, stay well:)

First Vlog

I'm pretty proud of myself right now, putting this up puts me way outside my comfort zone.  Stay well:)

A bad start.

North Western Hospital has a reputation of being one of the best in the USA.  Scratch that, North Western Hospital has a reputation of being one of the best in the world.  Great doctors, fantastic staff, awesome facilities and ground breaking research.  So why have they stuffed up everything I have had to do so far?

First, they managed to lose all the x-rays I sent to them.  This was no biggy, I had copies of everything that I could easily resend.  But as I said in a previous post, this is not enough to make me worry, but it does put a black mark against their name.

What is worse is that now I am 0 for 2.  As requested in my transplant diary, I turned up at the Galter Pavilion, level 18, to have my labs done.  I was in their system, but they did not have the order for my tests.  So they sent me to the neurology department.  But they sent me to the wrong one.  I needed clinical neurology and they had sent me to cognitive neurology and I fairly sure I'm don't have Alzheimer's...  Hang on where are we, I forgot.  Just kidding;)

So from there I went to the proper department of neurology where I again received no assistance.  So I decided to go to the department of immunology to see if I could clear this up.  But I wanted the division of Immunology and autoimmune disorders.  So off to department number five.  This was Dr Burt's office, so finally after about 20 minutes they came back to me and asked me to come back tomorrow.  Yes I was not very happy to say the least.

It is not all the needless running around that I minded, what bothers me is wondering what else they will stuff up.  I mean if they can lose x-rays could they lose my stem cells?  Or once I am neutropenic could they miss an all important blood test?

This may sound like a whinge, but I think it is extremely important.  After all these administrative bungles are not that important.What is important is I need to feel confident so when I get heavily into it I'll not be worried about mistakes costing me big time.  I will be talking to Paula about this tomorrow and I will be talking to Dr Burt about it Wednesday.   Although I do not think either mistake was their fault, Paula is in charge of my scheduling and Dr Burt is the department head and they are responsible for my treatment and care.  For Dr Burt this is one of the burdens of leadership.

Lastly I do not admonish myself from all responsibility.  I know I have travelled a long way for this procedure, paid a lot of money and left my family behind, but it is my health and my treatment.  I need to step up, reaffirm my faith in the hospital and make sure all will go well from here.  There are an awful lot of mistakes in hospitals that could have been one prevented by a number of people, the patient included.  I do not want to be involved in a mistake I could have prevented.  Time to put my game face on.  I need to be assertive, not aggressive.  Stern but friendly.  Until next time, stay well:)

Another shout out to me!

It took me a long time to get to 1000 page views of my blog.  It took a year and a half for me to reach 2000 page views.  And just four months out from that I have reached 10,000 page views.  Hopefully in a few months time I will be looking back at this milestone as I currently look at the 1000 page view mile stone when I get to 100,000.  However, I do realise that is, at the moment, just a dream.  But certainly not my most optimistic dream.  I dream that a year from now I will be able to run.  Is that unrealistic?  I don't know.  Only time will tell but without the dream I believe I wouldn't take the risk.

Well, back to giving myself a wrap.  Currently I am averaging about 100 page views a day.  I have 34 subscribers and nearly 150 comments left on my blog and Australia absolutely wiped the floor with India in the cricket on Sunday.  All is well.

However, it would be nice if I could get some sleep.  I finally nodded off at 1.30am last night and woke at 4.30am.  I couldn't get back to sleep so I just decided to play on the interweb.  Today is going to be a long day as I am going to have to stay up all day in order to get my clock right.  If I am blogging this time tomorrow you will know I failed:(  Damn jet lag.

So until next time, stay well:)

Sweet Home Chicago

Well for the next two months anyway.  And if it weren't so bloody cold I think I could happily live here.  Seriously, when I walked out of the airport I had this 'Cool Runnings' moment (The movie about the Jamaican bob sled team)  when the Jamaicans are all huddled up in the airport terminal because it is so cold outside.

But Chicago is quite fantastic.  The people I have met so far have been really helpful and friendly.  The city is clean and seems very exciting.  But it is only day one and as I am such a slave to jet lag I spent most of it sleeping.

However, when I finally got outside the first thing I noticed was the sheer size of all the buildings.  Seriously, they are huge.  Four of the six tallest buildings in the USA are right here in Chicago.  The hotel I am staying in is not small, it is 17 stories tall and is dwarfed by the John Hancock centre which is next door like a seedling in a mature old growth forest.  When I walked outside I looked up and saw and started feeling dizzy they're so big.

One stop I had to make was to a chemist/pharmacist/drug store (I can't remember the name in each country).  But I should say chemist/pharmacist/drug store/super market/convenience store/novelty store/bottle shop/confectionery/tobacconist/etc.  I find it funny that once you have got your prescription pharmaceuticals you gan go and get your beer and ciggies not more than one isle away.

One thing I have to say though is that even though it is a lot of fun exploring a new city, it would be more fun doing it with someone else.  I start testing tomorrow, I will tell you all about it next time.  Stay well:)

In Transit

Well I'm currently sitting in a lounge at LAX terminal three, waiting for my connection to Chicago.  It is a perfect day here in LA, and according to the weather forecast it is a balmy 39 degrees Fahrenheit in Chicago.  But I do like their optimism.  According to the TV here it is not partly cloudy, but partly sunny. It is certainly a glass half full mentality.

So far my trip has been a breeze.  Virgin Australia was fantastic.  The only thing I could mark them down on was the checkin.  Apart from that, the seats were comfortable, the service was excellent, the entertainment was outstanding and the food was delicious.  Hopefully the leg to Chicago will be equally as impressive.

So far, all of my fears have been unfounded.   Travelling is a skill that is not quickly forgotten and I have made it this far without fuss or delay.  If you ask me how I'm feeling right now I would have to say I am quite relaxed but very tired.  Currently it is 5am back home in Melbourne and I have never been one to handle jet lag well.

This is also going to be a really long day.  I got on the plane in Melbourne at 12.30pm on the 18th of February and after 14 hours of flying I got off at 7.00am on the 18th February.  I think there is a good chance I will sleep all the way to Chicago where I will check in with you all again.  Stay well:)

I'm leaving on a jet plane

A bit of travel related humour to lighten the mood.  Stay well:)

Cabrini rocks!

Touch wood, all being well, today was my last trip to the day oncology department at Cabrini hospital for IVIG.  Yeeeeee Haaaaaaa!!!!!!  Anyone that has IVIG treatment will be happy to tell you that it sucks quite frankly.  And although I will need one more treatment once I am in Chicago, it is an end to my monthly routine, hopefully for ever.

Now don't get me wrong, if I ever have to go back to day oncology at Cabrini it will be too soon, but if you ever do need to go to an oncology department, I couldn't recommend Cabrini enough.  The place is warm and comfortable and all the staff are fantastic.  I would try to mention them all by name but I will invariably forget someone.  But if any of you read this, thank you for the excellent care.

Looking forward, ironically it is not the treatment on my mind at the moment.  That will come later.  What is on my mind is navigating the LAX zoo and o'Hare airport in Chicago which is completely ridiculolus.  I have travelled to many places in my time, a lot of them by myself but for some reason I feel like a little boy taking the school bus for the first time.  Go figure.

Well next time I post I will be in Chicago.  Will tell you all about it then.  Stay well:)

AdNonSense

I guess I won't be putting ads on my blog after all.  Here is a copy of the e-Mail they sent me:

Hello Andrew MacBride Price,

Thank you for your interest in Google AdSense. After reviewing your
application, our specialists have found that it does not meet our program
criteria. Therefore, we are unable to accept you into our program.

We have certain policies in place that we believe will help ensure the
effectiveness of Google ads for our publishers as well as for our
advertisers. We review all publishers, and we reserve the right to decline
any application. As we grow, we may find that we are able to expand our
program to more web publishers with a wider variety of web content.

Please note that we may not be able to respond to inquiries regarding the
specific reasons for our decision. Thank you for your understanding.

Sincerely,

The Google AdSense Team

Stay well:)

Last night

Last night was terrible.  My daughter started getting all emotional just before bed time.  So much so, she ended up crying herself to sleep after nearly two hours.  She was inconsolable and there was nothing I could do to calm her down.

I tried going in and talking to her.  I tried reading her a story. I gave her a big cuddle.  I even broke a rule my wife and I have always had and said I would stay in her room until she fell asleep.  Nothing worked, and I every time I went in there I just set her off again.  In the end I just had to let her cry it out.  Just listening to her was awful.  I wanted to go in but I knew I couldn't.

I have harboured thoughts before of whether I have been doing the right thing but they have been purely personal and I have been able to rationalise the situation in my mind and always have come to the same conclusion.  I need to do this.  I have to do this.

But this is different.  Have I been selfish?  Have I been thinking of only myself all this time?  Other people in my life that I care about will miss me if the worst happens, but they are capable, independent adults.  They will get by.  But my kids?  You cannot just tailor make them another dad.  Should I be staying behind for them?  If I stay behind I will not be the dad I want to be, but at least I will be here.  If I go I may get better but I may not come back at all.

I have reconciled in my own mind that I am not afraid of death, but I want to live.  However, I am afraid of leaving my kids fatherless.  Honestly, so far this has been the hardest thing to deal with.  I have two days to figure it out because I look at it as once I am on the plane, that is it.  The point of no return.  Until next time, stay well:)

Busy, busy, busy.

Funny thing, at times in my life I have been an extremely good procrastinator.  For example, when it comes time to go to the dentist or get down and do some good old fashioned chores.  But, now is not one of those times.  I have been super busy doing bucket loads of stuff, but it seems the more I do, the busier I get.

At the moment it seems like everyone is just trying to get a last minute catch up with me before I go to Chicago but honestly, I am running out of time.  Don't get me wrong, I love being sociable just as much as the next guy, but a mere three more sleeps and it is off to the windy city.

So I have to prioritise.  Realistically, it is only two more days and one of those will be taken up with treatment so actually it is one more day and aside from the morning (while the kids are at school and my wife is at netball) I am saving the time for family.  Today, I took my daughter out for a treat, tomorrow I plan on taking my wife out for lunch and the in the afternoon bowling with my son.  I like bowling with the kids.  I have an excuse to use the ramps and bumpers. Finally in the evening I will be having dinner with the family.

For the people that I have been unable to catch up with, I apologise.  I would love to catch up with everyone, but time is against me.  I have been extremely touched by all the wishes and I look forward to keeping in touch with you all over the interweb.

Another funny thing, after saying I have not been procrastinating I am writing this blog instead of packing, so good night all and stay well:)

A new blogger

Normally I only refer to another blog if the subject matter written within one of their posts is something that I would like to make comment on or I feel deserves further discussion.  This blog is different because I don't feel like I need to make comment on it at the moment, but I do feel that I do need to give this blog a plug.

Why, because I am drawn to it as the author and myself share the same disease and I am yet to find another person that is writing about it.  That disease is cystinuria.  Although I would never wish the disease on anyone else, it is nice to read the story of another cystinuric.  It gives you a feeling of community to realise that you are not the only poor sod that has this disease.

I know that everyone has their demons to face but cystinuria can make you feel very alone as can any rare disease.  To know you are not alone is quite warm and comforting.  In my whole life I have never met anyone with either of the same rare diseases that I have with the exception of my brother who also has cystinuria and that is because of the whole genetic thing.

So happy blogging Simon, I for one will enjoy reading whatever ramblings spill from your mind onto your keyboard.  I will also take this opportunity to tell you that my daughter loved your bunny video but she did say you sounded like the Fat Controller off Thomas the Tank Engine.  Until next time, stay well:)

Oh yeah, his blog is called "My Life, My Health and My Loves".

Advice needed

I have a bit of a conundrum and although it is not strictly medical in nature it is 100% to do with this blog.  My conundrum is whether to allow advertising on my blog or not.

On one hand, being sick and going to Chicago isn't cheap.  Honestly, I can use any penny I can muster. But on the other side does it sacrifice my integrity as a blogger and a writer?  I would love to get your thoughts.

On a different note, I just checked the weather in Chicago.  And the verdict - it's bloody cold!  I mean below freezing and snowing cold.  I am going to miss the end of the Australian summer.  In my opinion, March is the nicest Melbourne month and I am going to miss it all.  Oh well, never mind. There is always next year.  And to look at the bright side, At least I am not going to Chicago to swim in lake Michigan.

Actually I have to say I might be having a little whinge about he weather in Chicago, but I have to say that medical procedures aside, I am really looking forward to it.  Everyone keeps telling me it is a fantastic city, and I have been on the tourist websites and there does look like plenty to do there.  I will keep you all posted.  Stay well:)

Toilet Humour

Yes, I have been told by many that I have a filthy mind.  But proctology does leave open the door to a wide range of humour.  Apologies to any one with rectal dysfunction, but I did find thin one funny.  Stay well:)

Meet Kylie

I think my story is compelling.  Personally, I don't want your sympathy.  What I would like is understanding and awareness of all sick people.  And why do I not want your sympathy?  Because medical issues aside, I have a pretty good life.  Fine friends, a wonderful family and many other things in my life that I can enjoy.

Now one of the lessons that I try to teach people is when you are sick you need to worry about yourself, and just because there are people worse off than yourself does not mean you forfeit the right to feel sorry for yourself and try all you can to get yourself better.  You do.  Everyone has the right to achieve the best health they possibly can.

But we cannot forget about all the other sick people.  We are stronger when we all help each other, and my heart goes out to anyone who has to battle medical conditions whatever they are.  For example, meet Kylie.  This beautiful girl has been through more in her few short years than most people go through in a life time.  The amazing thing is if you look at her profile picture she still has a smile on her face.  And to think of the stress it would put her parents under too.

The other hard thing in Kylie's case is she is still undiagnosed.  How can you effectively treat something when you don't know what it is and another reason why you need to go and like the Global Genes Project facebook page.  Until next time, stay well:)

5 days to go.

I feel like the next month or two will be full of countdowns.  At the moment I am counting down to my departure for Chicago.  (In case you didn't realise it is now just five days.)  Once I get to Chicago I will then be counting down to mobilisation, then harvesting and finally, transplantation.

Funnily enough, I am normally not that big on countdowns.  Some people countdown to everything.  Going on holidays, a special event or the start of the footy season.  My kids love to countdown the days to Christmas or their birthday.  For me, normally the day comes when it comes but this is different.  I don't know whether it is the nerves, the anticipation, the worry or the excitement but I am counting this one down.  I have been counting it down for the last month.

The other thing that I have done that is a little different is I have already started packing.  Normally packing for me is strictly a night before affair.  Sometimes even the day of but this time the packing started over a week ago.  However, saying that I am certainly not organised.  In the bathroom I have a miscellaneous pile of toiletries and medications awaiting sorting, in the bedroom is a random assortment of accessories I need to take with me and in the study I have all my medical documents, test results and x-rays that need packing.

But at least I am getting ready and that is something that will be pleasing my super organised wife who would normally be screaming at me by now to pull my finger out.  Well that is almost it for today.  I have so much to do and right now all I can think about is all the stuff I have queuing up to write about in my blog.  I think it will have to wait for a while though as for the next month or two I will be chronicling my experiences in Chicago.

Also, in case you didn't know, world rare disease day is on February 29th.  In order to support this day and the 350 million people world wide please visit their facebook page and like it.  We are after 1 million likes.  I have also featured in their stories of hope and inspiration which you can read here.  Until next time, stay well:)

My going away

Last night I had a little shin dig with some friends at a pub close to my place of residence.  It was really nice to see so many people there who had come out to wish me well and tell me that they were hoping that my treatment works for me.  I was really quite touched by it all.

I'll also take the opportunity to thank all the people who couldn't come but have sent me messages apologising for the absence and also wishing me the best.  One friend in America said they plugged the address of last nights venue into google maps and it said it would take 52 days to get here. Lol.  I think that the Pacific might host a small problem for most motor vehicles.

It also added a degree of finality to it all.  I will not see most of these people for the best part of six months as I will keep myself very secluded upon my return due to my suppressed immune system.  I now leave in a meagre six days and each day that passes things seem a little more imminent.  Nerves, worry and excitement are all poured in together.  In one respect I am really looking forward to it and on another I am dreading it.

I just keep telling myself I am not doing this because it is easy, I am doing it because it is worth it.

Thank you to all the people who came last night.  It was great to see you all and I hope you had a lovely time.  Until next time, stay well:)

Rare Project

Check it out!  Stay well:)

http://rareproject.org/2012/02/11/patient-stories-of-hope-and-inspiration-6/

Dr Google strikes again!

Luckily this has never happened to me........ I hope.  Stay well:)

Last doctor appointment

Well today I saw my new neurologist today and it was quite a welcome visit.  After seeing the last one and not getting the answers I was after this really felt like a breath of fresh air. As it was the first time I'd seen him he did give me the full work down.  I had to give him a full medical history and then it was onto the bed for a full medical exam.  Strength tests reflexes etc...

After it was all over we then got into the nitty gritty of whether or not I would qualify for the stem cell transplant.  We started by talking about what was involved with the stem cell treatment.  I fairly sure that he wanted to get an idea of how well informed I was about the whole procedure.  I think he was fairly impressed with my knowledge of the subject because we didn't talk about it for long.

He then wanted to question me about what I was getting myself into, and whether I understood what was involved.  I am no stranger to major medical procedures, so this one was not much of a problem for me either.  You might ask whether I was a little annoyed by his lines of questioning?  No.  I was a new patient who he had never met before.  He need to be thorough and he was.  I would have been more concerned if he wasn't.  However, after a relationship has been forged and we understand each other a little better, one can expect a little more brevity.

So what did he tell me at the end?  He thought I would comfortably qualify for the SCT.  Unfortunately a little late  to help me with all the tests I needed to do, but it was still very reassuring to know he thinks I would be accepted.  Until next time, stay well:)

How can we finish the job?

In the blog post titled "Great job but still a way to go", my friend Wendy made a good point.  Because of the risk to the pharmaceutical industry not wanting to put an end to genetic illness (because it will hurt their bottom line) it will never happen.

First before I continue I would just like to address the stem cell debate because in this case, I don't think that the same moral implications necessarily apply and here is why.  Now what I alluded to in the post mentioned above does fall under the category of embryonic stem cell research, but in this different.  Most embryonic stem cell research results in the destruction of the embryo.  In this case the embryo is not destroyed, but changed so that an individual can live a better healthier life.

Now we have got that cleared up we can start talking about the way to stop the pharmaceuticals from arresting this kind of research.  Well first, the research takes money.  Now a lot of the research done around the world is funded by pharmaceutical companies because they feel they can make some money out of it.

Now we can't make the pharmaceuticals fund research that is going to send them broke.  It would be like asking a worker to pay for the privilege of doing your job, so where do we get the money from?  Well we have to ask who stands to benefit from this.  Now the companies that are doing the research stand to benefit, but it is hard to find private investors who are willing to take a gamble on a business that realistically have a financial, viable product for at least thirty years.

One more viable option would be a conglomeration of insurance companies which give money to research projects that find it hard to find funding.  Why would they do this?  Well, sick people cost insurance companies money.  To decrease the number of sick people on the planet would be extremely profitable for insurance companies.

The last option is governments.  Personally, I believe that governments have a social responsibility to try and make their countries as healthy as possible without sacrificing the freedom of individuals.  Also, a healthier population means less drain on the state health care system, less people on welfare and more people out in the workforce paying tax.  Wow, that could mean a lot of money.  Unfortunately, politicians have a knack of not seeing past the next election.  As patients and citizens and voters we could help by showing appreciation to politicians for taking a long term view.

Another obstacle would be pharmaceutical companies lobbying to stall the research.  Personally I think that is horribly unethical but hey, it's not a perfect world.  Now, the pharmaceutical companies would find it hard to take the pro life stance (see paragraph 2) and the moral high ground would stand with the pro researchers.  Anyway, this battle isn't going to be fought just yet and don't get too excited.  There is still a long long way to go.  Until next time, stay well:)

The sacrifices I make for my health;)

It's not called perving any more.  It's called looking after your health or exercise.  Apologies, picture quality isn't great.

Stay well:)

Great Job, but Still a Way to Go.....

Doctors and scientists alike should all be applauded, and give themselves a huge pat on the back.  The advancements that have been made in medical science over the years have been staggering.  We have made huge improvements in keeping people alive and improving the quality of live for millions.  But the improvements we have made are also what could undo us in the future.  Let me elaborate.

I should be dead.  No really if we had the same medicine we had a century ago I would have probably died when I was twenty years old because I would have had an immovable kidneys stone that would have eventually sent my kidney necrotic.  From there the toxic build up would have shut down all the other organs in my body until I would finally succumb to a slow and painful death.

However, the quality of surgeries to remove kidney stones has improved so much that a stone can be removed without even breaking the skin, keeping the kidney working and the patient alive.  Now not only  am I alive I have been able to get married and more importantly, have children.  Although my kids have not been burdened with my cursed affliction, they will carry it.  In the past the disease would have ended with me, but now it is even more prevalent because I have passed on my genetic code, as have many others.

Another example of where this is again obvious is with cystic fibrosis.  Cystic fibrosis (CF) like cystinuria is recessive genetic disorder.  But that is pretty much where the similarities end.  CF is a disease that causes a thick mucus layer in the lungs and digestive tract.  In years gone by patients would have been lucky to see adulthood with the life expectancy of a CF  sufferer in 1980 being just 16 years old.  Today that figure is around 40.

Not only has medical science managed to stretch out the life expectancy of CF sufferers by 24 years, but they have managed to dramatically improve the quality of life of those patients too.  If you take a look at a young 22 year old by the name of Nathan Charles you’ll see what I mean.

Nathan Charles plays rugby for the Wallabies, the Australian rugby union national side.  To achieve such a position makes him one of the top elite athletes in the country.  Once upon a time he would have had to worry about living outside of his teens, now he can enjoy a wonderful quality of life.

So medical science, take your hat off.  Take a bow.  What has been achieved has been remarkable, but we are creating a problem.

As the quality of lives and life expectancy of people with genetic disorders increases, so does their propensity to procreate and pass on their genetic abnormalities.  Basically, what we will see in the future is a larger percentage of people who are afflicted by genetic disorders and also those carrying the defective genes.  We need to come up with an answer.

I guess we could go back to good old Darwinism, stop treating the sick and let nature weed them out.  But that would be truly barbaric.  It is in our nature to help those around us.  It is why we built hospitals in the first place and why we have a multi billion dollar medical industry.  It is also unworkable.  I mean, try putting a Darwinism policy through any legislature in the western world, and I guarantee you the only thing that will die is the political career of proposing politician.

People with genetic abnormalities could be banned from breeding.  Personally I would take great offence to this.  It is human nature to want to procreate, and I have.  Both my kids carry one of my defective genes, but should I have been banned from reproducing?  It is a persons right to choose to start a family, and everyone takes a risk of having a sick child.  For people like me that risk might be slightly greater, but my wife and I got medical advice before we conceived and although my kids are carriers they are not going to have my disease.


So what is the solution?  Well, I don't know if you have seen in the news about a month ago monkeys were born from stem cells.  The following article from Medical News Today outlines what they did.  


http://www.medicalnewstoday.com/articles/240036.php

So how will this help?  Effectively what we will be able to do is cut and paste strands from the DNA sequence in order to create a 'hybrid' individual from two or more embryos.  If we know that a parent will be passing on a genetic abnormality to a child, in the embryonic stage we will be able to cut out that DNA strand and replace it with a healthy one.  As this will effect the DNA at the rawest level it will remove the defect altogether.

Now this will not help the current living and breathing among us who are carrying genetic defects but it could help our unborn offspring.  I know a few parents of children with genetic defects who would give an arm and a leg to go back in time and cure their children before they were born.

I know that this is controversial research, but personally I am very excited.  I personally think that allowing our children to have happier and healthier lives is well worth it.  Of course, the large pharmaceutical companies probably won'[t like it as there will be less sick people being born with whom they can peddle their drugs to.  Until next time, stay well:)

Should a doctor be allowed to stop treating a patient?

A few times in my life a doctor has contacted me to inform me that they could no longer treat me.  One went on maternity leave, another retired, a third changed practices and a staggering four doctors moved either interstate or overseas. (The lengths some people will go to not to treat me)  But never has a doctor refused me treatment for professional reasons.

One of the blogs I like to read is from a gentleman that goes by the alias M D Whistleblower and the title of one of his recent posts was "When Should a Doctor Fire a Patient?"  I have to say when I first read it I was quite alarmed.  My first reaction was never!  But after rereading it I calmed down a little and I hope that my response comes over a little more subdued, informed and educated.  With my opinions I don't mind any disagreement.  In fact I welcome but I do not welcome arguments that are bullish or aggressive.

I hope my rebuttal is both tempered and respected.  So here goes.  First I have to say in regard to M D Whistleblower he did say he rarely fires a patient, and the fact he blogged about it means that he obviously takes it very seriously.

Second, I do think there is one situation where it is OK to fire a patient, and that is if the doctor or the staff feel their safety maybe compromised.  However, I do not feel as though the duty of care should end there.  The doctor concerned should be charged with finding an institution or facility where the patient can be treated and the safety of everyone can be guaranteed.

What I do not agree with is the non compliant patient.  As much as I try to convey to every patient that they should take accountability and responsibility for their own health and health care, I am not stupid enough to think that this won't happen.  But in this case doctors need to be the intelligent ones and do their best to make sure the patient helps themselves.  Doctors should not discard a patient just because they are exploiting potentially self destructive behaviour.

However, we have to also understand that doctors are doctors, not baby sitters and I think that the examples of litigation that M D Whistleblower alluded to are ridiculous and the ambulance chasing lawyers of no morals and little integrity should be ashamed of themselves for taking such a case.  So should the patients involved.

As far as I am concerned, the process should be like this:-

1. Doctor and patient meet.
2. Doctor and patient discuss diagnosis.
3. Doctor and patient discuss treatment options.
4. Doctor and patient decide on treatment options.
5. From here the patient is charged with following the instructions that both parties have decided on.  That includes doing tests, taking medications, attending follow up appointments etc...

You can't blame a doctor for giving a patient solid instructions of what to do in a consultation only to have them ignored.  I mean where does it end?  Is the doctor charged with holding the patients hand as he crosses the road?  Or should they be there at bed time to make sure the patients milk is warmed to the correct temperature?

In conclusion, I think doctors should not be able to fire a patient.  But I do understand it in order to protect themselves from litigation.  And there in lies the problem.  If a patient is the cause of their own downfall they should only have them self to blame.  A little self responsibility please.  So once again I have illustrated a fault in the system.  Where exploitation of a system designed to help people is instead hindering by pushing up insurance prices and making doctors selective about the patients they treat.  It is only bad for the patient community as a whole.

You can read the blog by M D Whistleblower by clicking the link above, or alternatively you can click here.  Stay well:)

The most painful

After writing yesterdays post on pain, I got to thinking about what are the most painful things I have ever had to endure.  Normally, I would say that the most painful thing ever is the pain you feel right there and then.  Since right now I am not feeling any pain I thought this would be a great time to write it.

Kidney Stone 10/10 - No surprises here.  Kidney stones are agony.  Basically, the kidney is blocked by a stone so no urine can get through.  The kidney swells up like a balloon and pain is inevitable.  There are a lot of nerves around the kidney too so the pain is also referred.  It can stretch from just under your ribs all the way down to your knee.  Peeing is painful as the bladder is irritated which also makes you want to urinate more frequently.

IVIG headache 9/10 - People have described it as having your head in a vice.  I think not only that but it also feels like you have a vice inside your head pushing out.  The pressure also feels like it is squeezing out snake venom through your eyes and ears.  Kidney stones and an IVIG headache are the only pains I have had that are great enough to induce vomiting.

Nerve pain 6/10 - This is the pain I was talking about in my last post.  The hardest part is it normally happens when I am asleep and I wake up only after it is out of control.  It is also very hard to treat.

Tonsillectomy 6/10 - If you didn't know, before I started blogging I had my tonsils out.  The pain was quite substantial, but what was worst about it was the fact is hung around for about two weeks.  However, it was quite treatable and I'm really glad I had it done.

Kidney surgery 5/10 - As you can imagine with any surgery, it is rather painful but a hard one to gauge as when you wake up you normally have some analgesia in your system which will be combating the pain.  With Kidney surgery I am referring to a percutaneous nephrolithotomy.

Tonsillitis 4/10 - Not as painful as the op, but probably the worst thing would also be tasting the puss at the back of your throat.  After a day of antibiotics the pain would normally subside.

Headache 2/10 - A normal headache.  As with everyone I get headaches from time to time.  I put this one in for a comparison with the IVIG headache so you would know.

Vasectomy 1/10 - Sorry guys, but this was a walk in the park, and I hate to burst all your bubbles when you are pushing for that extra bit of TLC from you beloved.  My testicles hurt more with kidney stones.

Now this is my personal pain scale.  Feel free to agree or disagree I'd love to hear, but I hope it will give people an insight to what pain can be like for some people.  Until next time, stay well:)

Pain

One of the things that patient are not judged on which they should be is what nearly everyone doesn't see.  This weekend I have had an extremely social couple of days.  Friday I went to the cricket.  Saturday we had a breakfast outing, followed by lunch (which finished at ten o clock at night) and another lunch on Sunday.  I guarantee that not one of the people I had the pleasure of seeing would have had any idea what  pain I was in Friday night.

It happens sometimes.  I wake up in the night and my arms are in agony.  They are painful, numb and I can't move them.  What makes it even worse is I am yet to find any form of pain relief that works.  All I can do is get out of bed walk around and try to get the blood flowing back into my arms.

After about ten minutes the pain will dissipate, but by the time I have got back to bed I have lost half an hour of sleep, and to add to the problem I find it will normally happen again once it has happened once.  In order to combat this all I can do is lie on my back with my arms in the air like a mummy.

The point I am trying to make is that life for the patient is almost always worse than what the third party observer will see.  So don't judge an individuals treatment choices when you can't really know what they are going through.  Until next time, stay well:)

Final Preps

I really feel now as though everything now is final.  I have had so many trips to see my GP in the last couple of months I have lost count.  I almost think he could retire on the amount of money I have sent his way.  But today was probably the last time I will see him until I get back from Chicago.

And just to stay true to form I stretched his mental prowess to the limit.  I went to get all my medications for my trip away, which sounds simple enough, but it isn't.  Firstly, I needed to get authority scripts for all my current medications, and we had to work out the right amount to take.

The fun part was all the drugs that had been requested from the doctors in Chicago.  You see, many of them have different names and not all the drugs are available in the same preparation that they are available in over here.  We managed to get the anti-fungal, the antibiotic and the anti-nausea all figured out, but the stumbling block was a drug called Norco.  Norco is an analgesic medication that is unavailable in Australia, so we had to go for the next best option, which was Endone.

Once we had figured all this out, we had to write a letter to all and sundry explaining all the medication and why I had it with me.  Apparently the airport security is the only place in America where it is impossible to get any form of customer service.  So not only am I not American, but I have a medical device implanted and I am carrying analgesic medication.  Fingers crossed that I am not strip searched and interrogated by the CIA.

I also had a small victory yesterday.  It was time for my six month dental check.  On my way there I remembered that I had to see a dentist in Chicago so I thought 'what the heck' and got Dr Jim to write a letter stating my exam day and that my teeth were in good condition.  I then e-Mailed Paula to ask whether this would suffice for my dental exam and whether I would need one in Chicago?  The answer was good!  This saves me money, and the more I save the better.

Lastly, I got news from Chicago that my payment had been received.  I now have all my ducks in a row for when I get there.  I have one more doctors appointment and one more treatment and then all that is left is to pack and get there.  On another note, I have always said that hospitals and medicine are not there to be the pinnacle of our lives.  Live is for living, not being sick and getting better so tonight I'm taking my son to the MCG to watch the international 20twenty match between Australia and India.  We are both very excited.  Come on Aussie!  Stay well:)

Risk Taker

Am I a risk taker?  Because I am doing what can only be described as a high risk procedure I must be a risk taker right?  I disagree.  According to wikipedia a risk is "the potential that a chosen action or activity (including the choice of inaction) will lead to a loss (an undesirable outcome). The notion implies that a choice having an influence on the outcome exists (or existed)."


But doesn't every choice we take carry risk?  Every time we travel in a car there is a small risk.  Or eating seafood in a restaurant, or eating in a restaurant, or even eating. So does that make everyone a risk taker?  I think the risk has to be high and the potential outcome has to be poor to be a real risk taker.


But an STC has a very high risk and the potential outcome could be death, so I must be a risk taker right? Well I think that there are two more factors that one has to look at.  First, for every risk there is a potential benefit and for me that benefit is massive.  Second, there is a risk associated with inaction.  Without this treatment I will slowly continue to degenerate until I am in a wheel chair and eventually functionless.  So there is risk in doing it, there is also risk in not doing it.


So instead of being a risk, it is probably more of a gamble.  Now I am not a gambler.  I certainly wouldn't take my life savings to the casino and put it all on black or mortgage my house so I could have a punt on number seven in race three.  So is this a gamble?  I mean do the procedure for a huge potential gain (being full use and feeling in my limbs) but risk potentially ending up dead or don't do the procedure, don't risk death but suffer slow deterioration.


The example I like to use that effects everyone is vaccinations.  Vaccinations do carry some risk.  Depending on what publications you read and who you believe they can cause learning disabilities, autism, autoimmune diseases etc...  But if you decide not to be vaccinated you leave yourself open to the risk of contracting the disease the vaccine was designed to protect you from.


What makes this different to gambling is choice.  You can choose to be vaccinated or not be vaccinated, but there is no third option.  You are in the game like it or not.  At the roulette table you can choose red or black, but there is a third option.  Simply don't bet.


I do not view the SCT as a risk taking activity or a gamble.  It is a choice I have to take.  A choice I am forced to take.  So I did my research, weighed up the pros and cons and considered as many variable factors as my brain could handle and I've made my decision.  Only time will tell if it is the right one.  Stay well:)

There is not one positive.

I think it is time to take a break from blogging about Chicago for a moment and change the topic to something that has bugged me for a while.  It is a mindless bureaucratic policy designed to protect hospitals from litigation, but guess what.  In my opinion it does nothing but decrease the well being and safety of patients.

Let me elaborate.  I get all my medications (or as much as possible) from one pharmacist.  She does a great job, always informs me of my options, instructions for the drug and any other information I need to know.  When I get home my wife and I sort them out into days, morning and evening so I don't have to worry about doing it every day.  I have put a picture of my pill box below.

But when ever I go into hospital they will not allow me to take my medication from my pill box.  They will not even allow me to use a pharmacist prepared Webster pack.  All pills must be in their original container and administered by the ward nurse.

And this is where it all falls down.  I have a very complicated medication regime.  Four different specialists prescribe me my medications, so in order to make it easy I simply get them to write to my GP and he prescribes all my medications in one go.  I then take all his scripts to one pharmacist and she dispenses the lot for me.

Now, aside from myself, my GP and my pharmacist (both highly qualified and experienced medical professionals) know the most about my regime of medications.  But for the hospital, that is not good enough.  Instead, my pills have to be administered by a ward nurse who knows nothing about me, my medications and why I take them.

Please don't get me wrong, I think nurses are great and do an awesome job.  But 9 out of 10 times they get my meds wrong, and I have to wait until they leave the room to sort them out.  Now I get why patients aren't allowed to administer their own pills in hospital, but why not a pharmacist prepared Webster pack?  Pharmacists know the drugs better than any nurse does, after all, it is what they do!

But alas, due to stupid hospital bureaucracy, us patients to worry about getting a potential wrong dose from the nurses.  And it is not fair on the nurses too.  They are not qualified in this area, pharmacists are.  And to think how much time nurses must waste trying to figure out patients medications.

So, I've established that it is dangerous to the patient, it is a waste of time for the nurses and adds to administrative handling (which the bureaucrats love because it justifies their job, valid or not).  And I have a simple solution too.  Webster packs provided by qualified pharmacists at the patients choice or the hospital pharmacist.  The pharmacist makes their money selling the drugs so there is no added financial cost.  The pill packs are far more likely to be prepared correctly, increasing patient safety, the nurses will have more time to do what they do best (care for patients) and there will be less paperwork and administration (sorry bureaucrats).

In short everybody wins (accept the bureaucrats).  This is just one example where policy is ridiculous and just adds weight to the turning speed of the cogs which are our medical system.  There are many examples of needless policy in the medical system.  Something needs to be done.  Until next time, stay well:)