Tragedy

It is with great sadness that today I am writing about a fellow HSCT patient that passed away recently after complications.  I did not know Gabriella.  I hadn't even talked to her but the HSCT for autoimmune diseases community is still quite small so I certainly knew of her.

However, as an HSCT patient and advocate of the procedure it raises many questions.  Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them.  Essentially we need to tackle the proverbial elephant in the room.  My points are:-

• Is the procedure safe and is it worth the risk given the potential benefit?

Personally I feel that given the evidence that we now have available it is a relatively safe procedure.  With any medical procedure, from a simple blood test to open heart surgery there is a risk.  The fact that other facilities offering the procedure have not changed their practices at all says to me that is not the case.

• Is the institution in India to blame?

Honestly I can't answer this.  I have never been to India to see the facility or meet the doctors involved. In fact I have never even researched the hospital so I can't and won't give an opinion.  However, the hospital has shut down its HSCT unit pending an investigation.  I can only think this is a good thing.  Carrying on in a cavalier fashion as if nothing had happened would be negligent. 

• Who else might be to blame?

Blame is such an ugly word.  Blame assumes that someone was at fault and that might not be the case at all.  It could very well be that all protocol was followed thoroughly and her death was nothing more than a tragedy.  I am actually going to use the word responsible as there is not an assumption of guilt on those who are responsible.  So who is responsible?

Now before you condemn me as an insensitive evil pig please read to the end as I will explain myself.  The person most responsible is the patient, in this case Gabriella.  "My Gosh" I hear you say.  "Wasn't she the victim?"  Well, yes she was.  But she was also the one who decided to go through with the procedure.  She would have known the risks and would have weighed up the pros and cons, the risks and benefits and would have made her decision.

I know this because it was the thought process that I went through before I left for Chicago.  I had weighed up all the variable and outcomes I could think of and yes.  The fact I could die did play a part. Some people thought I might be mad.  That I was gambling with my life.  I could not have thought of it more differently.  Sure, there was a choice not to have the procedure.  But that choice involved still having CIDP.  Living with pain.  An inability to move properly and a massively dysfunctional sense of feel and touch coupled with balance issues.  When this is you situation, you start to think very differently about your situation.

In a similar way to me having brain surgery, I went into my transplant with my eyes wide open.  I am sure that Gabriella did too.  I also have to say that if I did die due to my transplant I would not have wanted anyone else to be responsible.  I made the decision and I was prepared to take responsibility for whatever the outcome.  I had even prepared a series of video messages for a variety of people and one of the points I wanted to make was that I was the one responsible.  The last thing I wanted was for people to go around blaming each other for my decision.  And whilst I got the blessing to go ahead with it from close friends and family, as well as past patients who advocated strongly for the procedure, The final decision was mine and mine alone.

• Would it have stopped me having my transplant had this happened to prior to me going to Chicago?

It is a tough one to answer because I have the benefit of hindsight.  I think I would have still gone through with it.  I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.


It is never easy contracting a nasty auto immune disease like CIDP or MS.  We just have to make the best decisions that are available to us at the time.  I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was.  Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.

Stay well:)

A sad week.

I hope these things don't happen in threes.  Last week I had two friends pass away, and whilst neither were 'besties', I found it quite sad as I not only contemplated my own mortality, but was thankful for being able to receive  treatment that I continue to recover from that has potentially saved my life.

Basil was a wonderful man who passed away in his 80's.  A veteran of WWII, an active member of the RSL and a veteran firefighter, it is safe to say Basil lived a full and eventful life.  I really liked Basil, if we were ever at a social gathering together (which happened quite frequently courtesy of my wonderful socialite mother in law) I found I always gravitated towards Basil as it was a guarantee of a warm, friendly and interesting conversation.

I met Jimmy as a fresh 19 year old university student.  I had recently joined the university waterski club and Jimmy, being a veteran member, was a couple of years older than me.  About six months after that Jimmy finished his degree and moved to Sydney.  As a result he resigned his post on the executive of the waterski club which left an opening.  Given that there were more senior people in line for the position I was not going to throw my hat in the ring but Jimmy had decided I would be the best person for the job and convinced me to have a go.  Not only did he do that he also ensured I had enough votes to win.  Jimmy was always fun.  His presence meant a good fun time was guaranteed and tragically cancer cut his life short.

Although both these men were quite different they had a few things in common.  Most notably, they both enjoyed life and lived it to the fullest.  If there is one thing to learn from them that is it.  Everyone of us only has one life and when your time is up that's it.  So, make the most of it while you can.  Last night I attended the school concert of my son and I think the last song they sung said it best.  "Have Fun While You're Still Alive". Stay well:)

RIP Granny

Last week was an amazingly turbulent and emotional week for me.  I had the wonderful news of the birth of my first nephew and this morning I received the sad news of my grandmothers passing.

Although very sad.  It is not tragic.  Never more than this week I have been reminded of the circle of life.  We're born, we live, we die.  On one hand my nephew has just embarked on the journey of life, and right now he has no idea of the amazing voyage he is about to embark.  On the other hand the final chapter has closed in the story of my grandmother.

And what an amazing story it was.  She was such a lovely person and she would have touched so many people in a positive way.  As a child she was always there too cuddle me when I was sad, laugh with me when I was happy, nurse me when I was sick and discipline me when I was naughty.  Her love was unconditional, her sincerity genuine and her example flawless.

And although she is now gone, her legacy of five children, seven grandchildren and twelve great grandchildren still live on, and she will live on in our hearts and memories for many years to come.

You leave the world a better place for having been here.  Rest in peace granny.  I love you.