There is a risk to the procedure I am undertaking currently, and I am going to bring in a work perspective, as addressing risk is inherent to my daily work life. This is quite a long post, but I got a bit carried away with writing it ( yes, I am feeling better and the medical results show that as well). I work for Woodside, an Oil and Gas producer operating in, amongst other places, Western Australia. As an O&G producer, the risks inherent in our business, involved in high pressure oil and gas, in sensitive environments, clearly need to be managed in an proactive and effective manner.
What is risk ? Also, an equally important question, is what is a person ( or company’s) appetite and acceptance for risk ?
Risk = consequence * likelihood. I have put in a risk matrix below, note this is one from a quick Google search but illustrates the point that, the higher the possible consequences, and the higher the likelihood, the higher the risk of the activity.
Also, consider a high consequence but low likelihood activity compared to a low consequence but high likelihood activity; some examples ( non-work but happy to start that discussion off the blog with any nerds out there interested) of all three to show what I mean
- low likelihood but high consequences; heli-skiing down an unmarked run, or white water kayaking down a grade 5 rapids ( very very white water). The ultimate consequence here is clearly extremely high, I’d go as far as to say fatality, but the likelihood of the standard person, without training and assistance and support systems, being in that position, is extremely unlikely. For an experienced skier or kayaker, with appropriate support and training, as we have seen from all the Red Bull type videos, the risk is much lower.
- high likelihood but low consequences; tripping on an icy pavement and spraining an ankle. We’ve all done this or something similar. The likelihood is high, but the actual consequences relatively low. There is little to do to prevent the consequence other than wearing appropriate footwear and being aware of your situation ( watch for the ice), but a little time off work and annoyance is the worst consequence for most people.
- high likelihood and high consequence; a traffic accident on a busy street when distracted on the phone causing a major injury or fatality. I struggled the most with the example for this one, so had to bring in the distraction factor, but this is a risk scenario that all of us face in our daily lives. Most of us don’t face high likelihood, high consequence hence severe risk activities in our daily lives. However, the scenario of a busy road, distraction due to domestic issues maybe, using the mobile, and taking that mis-timed step off the pavement into the path of a moving vehicle is real to all of us.
This brings me to mitigating measures, which can mitigate the consequences or the likelihood of the event. Training, being aware of our situation, wearing appropriate gear, experience ( not the same thing as training), a trusted team, focus and avoidance of distraction, safety systems like smoke alarms or fire extinguishers, these all lower the likelihood or consequence of an event hence the risk.
Ok that was a long preamble to get to the point of this procedure, AHSCT, which I chose to undergo. I will be open here, the decision was ours and against the advice of my neurologist but with very guarded openness from my haematologist although he was very careful not to endorse the procedure.
There are definitely risks of this procedure, with the ultimate consequence being personal fatality and the procedure is still seen as experimental but with very promising results coming from NHS, Canadian and American trials, using similar protocols to the ones I am undergoing. This puts the risk as high with no mitigating measures, but with mitigating measures, for Andy and I our personal decision was that the risks were acceptable to us for the strong likely benefits. I emphasise here, our personal decision was to accept the risks, but this is a decision only to be taken individually as it is totally dependant on personal risk tolerance and confrontational ability.
Aspects I feel mitigate the risks of this procedure
- a lot of people have asked about Russia and why Moscow. Moscow have been doing this procedure since 2005, and have one of the highest numbers of people successfully completed the treatment. So, experience and it’s in-patient in the major Moscow teaching and research hospital are major benefits
- Moscow has low fatality rates. Also, there is a history of medical research here in Russia, and some of the stem cell discoveries I have spoken about in a previous posting were made by scientists and doctors here at the Pirogov Centre. Moscow is also totally open about their protocols and include follow-up advise and guidance as required.
- Anecdotal, but I spoke to quite a few people who had been here for exactly the same treatment, some whom have way more medical experience than me, and they highly recommended the facility. I also used social media to check on experiences here
- the NHS trials and published papers out of countries like Canada and America all give very favourable indications for the treatment, using very similar protocols. A prominent NHS neurologist publically saying this treatment may be a game -changer for MS patients was a major factor for our decision making
I guess this comes down to confronting risk. I have a high risk tolerance in my personal life, I think my solo travelling, kayaking and skiing activities demonstrate that clearly enough. Weighing up the potential, and likely benefit, of halting the MS and possible symptomatic improvements, and the risks with all the factors detailed above, made it a relatively easy choice for us.