Am I Fickle?

One of the luxuries of being a patient is that you have the luxury of being treated.  You can decide your favored treatment option and then change your mind right up to the eleventh hour.  You can change your doctor of preference as and when you please without a good reason if that is what you wish to do.

Now I certainly don’t recommend that this is what you do, but if there is a good reason for changing your mind you should be aloud to do so.  And realistically that is what I have done recently.  Twice in fact.

Now just to clarify, my recovery has been going really well and I am more than happy with the way things have been progressing, but you don’t have something as major as a stem cell transplant and expect everything to go perfectly.  And I have had my speed bumps.  They haven’t been huge or insurmountable but they are there.

The first and biggest problem is this horrid carpel tunnel syndrome (CTS) that has been creeping up on me and slowly getting worse over the last couple of months.  I’m convinced it is different to the arm pain that I experienced before my transplant, the symptoms I have now are typical carpel tunnel symptoms.  Before my whole arm from below the shoulder hurt.

So the question is what to do and what is causing it?  Well although the clinical diagnosis of my symptoms is CTS the doctors like to confirm with a more objective test.  This would normally be a nerve conduction study but the remnants of my CIDP would mask any conclusive data that I received from this test.  They could do an MRI of my hands but MRI’s and brain implants don’t really mix too well.  So I have to revert to the clinical diagnosis.

It is also important to decide on a treatment option.  And this is where we run into difficulties.  In my transplant notes regarding my recovery it says not to have any surgery within one year of my transplant date.  But most of my doctors here agree that carpel release surgery is the best way to go and my neuro here in Melbourne (who is normally very conservative) is actually pushing for it.

My GP has proposed a short-term solution of cortisone injections.  And here comes my first fickle moment.  To date I have followed the instructions of the people in Chicago, but I believe that I need the surgery.  Research shows the longer CTS goes untreated the greater the chance of long term or permanent damage.  So I think I am changing my mind about following the Chicago instructions.

The second fickle moment is to do with my prophylactic medication.  I have been advised by the good people in Chicago to stop taking Bactrim, an antibiotic, as it has been six months post transplant.  However the hematologist I see in Melbourne has had a look at my blood count and said that while my white blood count is fine my lymphocytes are still very low and I should continue with Bactrim to avoid chest infections.  So again my fickle nature has ignored the advice of the good people in Chicago and gone with the doctors here in Melbourne.

But honestly, is it really fickle?  I have weighed up my options, done my research and made my own decision.  One thing that hasn’t changed is I have always taken responsibility for my health and ultimately I will make the decisions about my treatment.  I am right or wrong?  Only time will tell.  But I guarantee you this.  I going into this with my eyes wide open.  Well, until a general anesthetic anyway.  Until next time, stay wellJ

Second Prophecy

Ok, ok, ok.  This one probably isn't really a prophecy as it is already happening.  I am of course referring to the proliferation of social media and the role that it has in medicine.

I guess the part that hasn't happened yet is that certain members of the medical fraternity still refuse to acknowledge the influence that it has and will continue to have in an increasing manner.  They seem to think of it as a tool for teenage girls to enhance their narcissism and spread gossip.  But it is far more than that.

Inside the world of medicine social media is increasingly being used by professionals to let others know of what they have done, what they are doing and share new ideas and their experiences.  It has been used for doctors to put live updates on an operation to the world via twitter.  Procedures have even been videoed.

And if doctors still decide not to embrace social media they need to understand it.  Why? Because their patients are using it.  Never before have individuals and patients been so informed about the ailments which afflict them and the treatments that are available.  If a doctor cannot talk candidly about the information a patient has found on the internet, the doctor will loose the confidence of that individual and patient care will be compromised.

One also has to be aware that for all the wonderful information there is to be found on the internet there is also nearly just as much bogus information and it will become the doctors job to assist the patient in deciphering the difference between quality information and bogus offerings by the snake oil salesmen.

Socialmedia is going to become more prevalent.  As it stands there is a forum some where to do with any disease and or treatment.  If doctors decide to ignore it they will essentially be disadvantaging themselves by keeping themselves from the latest information.

In short, social media and the internet is going to be a fantastic tool for both doctors and patients alike.  But make sure that you are wary about what you read and check everything as there is a great deal of bogus info on the net.  Until next time, stay well:)

Lance Armstrong

Assuming that you have any contact to media, and given that you are reading this post on the interweb I'm assuming that you do, you would have been privy to the spectacular fall form grace of the once heroic and indestructible Lance Armstrong.  In terms of the sporting impositions that have been placed upon him I really have no comment as I simple do not know enough about it.  But I do believe that if he is guilty (and that is not for me to decide) then you need to face the consequences.  Do the crime do the time.

However, although one part of his life has been seriously marred by this scandal I would implore people not to forget the fantastic work he has done.  I am of course, pointing to the work he has done with his charity "Live Strong".  He has brought a great deal of awareness to cancer sufferers all over the world and raised a huge amount of money to help sufferers and assist with research.

So I ask one thing of you all.  Do not let his charity or his charity work pay for his indiscretions.  This will not punish him but all the cancer patients he is trying to help.  The charity will have suffered enough without individuals deciding to pull their support away too.  Until next time, stay well:)

My First Prophercy

Well, I am no Nostradamus but I do think that common sense does dictate that my prophecy may come true.  So I thought I'd start off with an easy one and work up from there.  It is also close to my heart as where the technology has come from so far has changed my life.  I want to write about the evolution of HSCT for autoimmune diseases.

Now I have to say that I am mildly disappointed at how far the technology has come at present but that is another post for another day.  However, it is here now and that is a great thing.  Especially for me.  So how is this a prophecy?

Well the first thing that is really important to know is that even with what we do know about the human body and medicine there is a whole lot more we don't know.  With HSCT for AIDs we basically destroy the immune system in what is quite an aggressive process in order to be able to regrow an immune system that does not have a defect.

I believe in the future we will be able to look deeper into the immune system and instead of destroying the whole immune system, just destroy the defective part.  There is two parts to this.  First, being able to identifying exactly where the defect is, and then having the right drugs and or tools to simply attack that
specific point.  The technology will eventually be good enough that there will be no need for stem cells or hospitalisations.

I believe that it is just a matter of time.  I would love to know what you think.  Until next time, stay well:)

Qantas Sucks

I thought about writing this post a couple of weeks ago after a horror trip from Melbourne to LA.  However I decided against it as I started this blog to write about my medical adventures and anything health related that took my fancy.  Occasionally I have strayed away from this but never to really vent about something outside this scope.

But on my return voyage from London to Australia I saw something that really made my blood boil.  But it is best I start at the beginning when we left Melbourne back at the start of September.  First, our flight was eight hours delayed then we were reallocated thirty rows back without any warning where the chairs did not work properly and the kids didn't receive their kids meals.  Finally, when my daughter was sick (partly because we were seated at the very back now) we received no help.

I wrote a letter of complaint and in return we received a $200 gift certificate, which I believe hardly enough to placate or silence me as the monetary recompense was not nearly enough to cover the financial loss we incurred due to the delay.  And given I purchased four round the world tickets I found their attempt at placating me a little insulting.  Ironically though the trip on the way back was much better for us but for one incident that didn't even effect me but I did find disgusting and disgraceful on behalf of Qantas.

As we boarded the plane there was a lady there that was clearly having difficulty walking as she had two crutches and visible foot orthotics.  She politely asked at the desk about someone wheel chairing her to the plane and she was subsequently ignored so she struggled down the jetway be herself.  I stopped her and asked her if she needed any help and as I looked into her eyes I saw a very familiar picture that I have seen in many others including myself.

It is a look of shame and embarrassment at having to need the assistance and also pride at not insisting on it.  I remembered my last overseas trip where I had my transplant and I needed the help.  Thankfully now I don't but this situation made me angry.  Help is supposed to be there for those who need it and it wasn't.  It seemed very different to my Disneyland post where people were, in my opinion, routing a system designed to help people like this poor lady at the Qantas gate.

A couple of weeks ago I was talking with a friend in London who is disabled and she said "it's funny, during the paralympics people looked admirably at the disabled.  Now they just see a bunch of dole bludgers.  I sincerely hope that this is not the mentality of Qantas and its staff but in the last two years I have flown a number of Airlines including Virgin International, Virgin Australia, Virgin America, Jet Star, Air New Zealand American Airlines, Delta Airlines and British Airway and by far and a way yhe worst were Qantas.  Well until next time, stay well:)

A Fantastic Trip

Although I'm still away our overseas trip is coming to a close and I think it is safe to say that we all had a really great time.  I really think it is amazing how much we managed to pack into our holiday and I have to say I'm looking forward to the end now and returning home.  It is hard to believe that whilst I have been away I have surprised myself with what I have been able to accomplish.

I think that the first thing that has struck me is my stamina.  I noticed this at my fellow CIDPer and HSCT recipient Bob's survivor party when I was able to stand for a long period of time without my stick and more incredibly not looking for a chair.  Prior to my stem cell transplant the best I could have done would have been about ten minutes before I had to sit down.  Now, just the simple act of standing does not bother me.

The second thing I noticed was my ability to walk long distances.  In my travels we have visited Disneyland, Chicago, London and Paris and I have to say that without the use of a car we walked everywhere.  I didn't manage to measure the lengths of my walks but if I was to hazard a guess I would probably say the the maximum distance would have been about 10 kilometres.  I also managed to scale to the top of the Arc de Triomphe which would have been about 300 steps.

But probably my biggest success would have been in the re-ignation of an old time passion of mine.  These days in the UK the country is slowly filling up with indoor ski slopes.  Now it is no comparison to the lavish and vast ski slopes of Europe or America, but for someone in my position it was perfect.  A gentle slope of about 200 metres.  Certainly no where near the challenges I would confront myself with 15 years ago but under the circumstances, probably the most daunting skiing experience I have ever had.

Now I am not in the business of overcoming one medical issue (CIDP) and replacing it with another (like a broken leg).  But it was on my to do list so I wanted to get it done.  So off I went with my brother, an accomplished skier in his own right, to have a crack.  I have to say the first couple of runs were really tough, but the return to form was quite successful and the improvement was substantial by the time our hour was out and it was time to be ushered off the snow.  Saying that the standard I achieved was no where near where it used to be but there will be another time and who know where that will take me?

Anyway, tomorrow we return to Australia after a wonderful and successful trip.  It will be good to be home and hopefully you will hear from me more often once I return.  Until then, stay well:)