Thursday, June 13, 2013

What to expect when you're expecting........ HSCT

Now if you have the time and the inclination you could pretty much get all the information you need from reading my previous posts from last year.  But given that most people are time poor and don't want to plough through the best part of a hundred posts I thought I'd condense it into one little post for you all to read.

Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT.  It is by no means generic and don't think that if you have HSCT your experience will be exactly the same.  Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.

So where do I start.  Well the beginning would be logical.  I contracted CIDP in 2000.  It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease.  I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.

It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression.  It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke."  There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting.  Really really badly.

Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life.  This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders.  It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful.  However, I always new 2006 was my low point and it still hung over me like the sword of Damocles.  I still had CIDP and I still had cystinuria.

I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt.  In his blog he wrote that Crohn's disease was an autoimmune disease.  I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?"  After all, CIDP is an inflammatory autoimmune disease too.

And what do you know, Dr Burt had a trial for CIDP too.  I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one.  I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through.  In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.

Now people have called me mad, stupid, brave and strong to have had this done.  I disagree with all of it.  I honestly thought I didn't have a choice.  Without the treatment my future didn't hold much for me.  A wheel chair? palliative care? Loss of bowel and bladder control? Death?  And living half a life in-between?  I did not feel brave or strong I felt like I was left with only one option.  Mad and stupid too?  I did my research.  I read the published studies and I talked to the transplant recipients who had gone before me.  Everything made sense.  If you had asked me I think I would have been mad not to have had it done.

So off I went to Chicago.  Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial.  Fortunately I was.  The other worrying thought I had was what if it didn't work.  I eventually reconciled this by telling myself that if I tried it and failed at least I would know.  If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years.  Just slowly watching myself get worse.

Strangely enough I knew that the procedure was going to be tough but that didn't bother me.  I was focussed on the goal and that kept me going.  I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself.  I did know what I was getting myself in to.

My Chicago trip was really in two halves.  The first half was all testing and appointments in the morning and the rest of the day to do as I pleased.  I can't lie, it was fun although I did miss my family.  I even managed to squeeze a trip into Washington DC to see some friends which was great fun.  But the second half was the serious side.

I survived the mobilisation process quite well.  The first round of chemo didn't hit me too hard.  I was slightly off my food but I did not feel nauseous.  However I did have a craving for chocolate milkshakes but others might just say that was normal for me.  The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.

Finally conditioning came around.  After five days of chemo it was safe to say I felt awful.  Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had.  Even with all the anti nausea drugs I still felt terrible.  This link to one of my posts will give you a snapshot of just how bad I felt.

Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home.  It was a really hard flight.  Even in business I felt restless and unwell.  If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic.  When I arrived back in Melbourne I could barely walk I was so tired.

After a month of rest and recuperation I started to feel like myself again.  Since then the progress has been slow and steady but undeniable.  In hindsight I am so glad I did it.  Finally I not only found a treatment that halted disease progression completely but sent it back the other way.  Since then I have been able to run, play cricket and go skiing.  But the best part is the little things.  I used to have to crawl to the bathroom in the middle of the night when I needed to go.  I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.

To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease.  As for me now, I have my life back.  I can look forward with confidence, not worry.  The glass used to be half empty, now it is half full.  Don't believe me check out my video.

Stay well:)


  1. Awesome post Andy! I couldn't agree more about my HSCT also! Worth every moment! Other than a few hiccups post transplant, I am doing very well too! This post really says it all! Congrats!

    1. Hi Andrew,
      I have Devics disease and am thinking about going to Chicago for the stem cell treatment. I am assuming private health insurance doesn't cover any of the costs of the that correct? How much did the procedure itself cost (not airfare or hotel)? Does Medicare reimburse any of the cost? If you are accepted for a trial, is the procedure free?
      Many thanks,

    2. Hi Jo, Chicago is expensive, really expensive. The cost is about $150K US. Medicare won't cover it and my health insurance didn't (NIB) but that doesn't mean yours won't. But that is the bad news. There is good news too in the form of other options for HSCT. If you contact me through Facebook I'll be happy to tell you all about them.