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:)

Vaccinations

My goodness me, it has been a while since my last post.  Apologies.  I don't have a really good excuse, I have just been lazy.  But hey, I'm writing now so good for me!

A great deal has been happening recently and for once it is not he who has been the focus of the medical interventions.  That honour goes to my son who broke his arm (which I blogged about last time) went to hospital for a minor dental procedure and managed to scrape all the skin off his index finger which then became infected and needed to be treated with antibiotics.  Aside from the dental procedure, which was purely cosmetic, the other two were just a nine year old boy being a nine year old boy.

After saying all that the doctors have not completely eluded me either as the juggernaut, which is my medical story rolls on.  I had blood work done recently which finally showed my blood levels had returned to normal.  This meant that it was time to revisit my immunisation regime and my oh my there are a lot of them.

Now for most HSCT patients this is nothing more than procedure but with a patient that had HSCT for an auto immune disease this process is much more complicated.  I will elaborate.

Auto immune diseases do not just happen.  Some people may have a genetic predisposition to contracting one of them but there is always an environmental trigger that starts the process.  There are many things that can be the trigger.  A virus or infection, a toxin, a medication or allergic reaction... The list is almost endless but one of the biggest suspects is a vaccine.

It is really quite logical.  A vaccine is designed to trigger an immune response that means if a person is exposed to the disease that has been vaccinated against, the persons immune system will attack the disease.  If the immune system misinterprets the vaccine it could end up causing an autoimmune (AID) disease.  The problem is most medical professionals will refute this link but there are sufferers of autoimmune diseases that swear black and blue that the vaccine was their "trigger".

Personally, I believe that a vaccination could be responsible for causing an AID.  But the question is whether the benefit of me having a vaccine is worth the risk of having a relapse.  Since I am fairly sure that a vaccine didn't trigger my AID in the first place I think that a vaccine won't do it to me this time.  However, I'm going to go pretty slowly with it just to be safe.  My program will be on and off for over a year.

Just so you know, this is a decision I have taken very seriously.  I let you all know how I go as I progress.  Until next time, stay well:)

Stem Cell Transplant

I have had a fair few questions about my stem cell transplant recently.  And rightly so.  A stem cell transplant can mean a number of things from deriving a small amount of stem cells from fat tissues purely for cosmetic purposes all the way up to a total bone marrow transplant.  Here are the details of what I will hopefully be going through.

The full name of my procedure is an autologous hematopoietic stem cell transplantation.  Definitions are as follows:-

Autologous:- Derived or transferred from the same individuals body*

Hematopoietic:- The formation of blood or blood cells in the body*

Stem Cell:-  An unspecialised cell that gives rise to a specialised cell, such as a blood cell*

Transplant:- To transfer (tissue or organ) from one body or body part to another*

*Definitions from www.thefreedictionary.com

So, in short, the procedure is the donation of blood stem cell from myself to myself.  But it is a fraction more complicated than that.  The following diagram gives a brief explanation of the process:

The hard part comes in three sections.  There is the first round of chemotherapy that is used to stimulate the growth of stem cells so they can harvest as many they can.  Also have to have Neupogen injections for one week to assist in this endeavor.  Both the chemo and neupogen are not without their side effects, which is the fun part.

Second, is the intensive round of chemotherapy.  We all know someone who has had cancer and the difficulty that they have had.  Aside from me not having cancer it really is not much different.  The iidea of this round of chemo is to completely destroy all white blood cells, so when the stem cell are reintroduced they create a brand new immune system and there is nothing left to copy.  If I simply re-grew a copy of my old immune system I would still have the antibodies that were attacking my nervous system.

Third, after the second round of chemo I'll be completely neutropenic.  Meaning I will have no immune system and unable to fight off infection.  Even a common cold could be life threatening, so I have to be really careful for the next few months to make sure I don't catch anything.  Even though they have a timeline for when they think you should reach certain milestones, what really dictates when you reach those milestones is your white blood count as that is the best indication of the strength of your immune system.

Next time I will post my transplant schedule, so all going to plan, you will be able to know when I will be facing each stage.  Until then, stay well:)