Hydrocephalus: Coronavirus (COVID19)

I’d be lying if I said, I’m not concerned.

The outbreak of the coronavirus is a hot topic across the world right now. I also have no doubt that there are some of us, living with Hydrocephalus, who are questioning the level of risk to us. In fact, many have asked the question. This is understandable. From what I’ve read, the general consensus appears to be, if you don’t have any other health issues (though not limited to) e.g. Respiratory issues, etc. then you are low risk.

The obvious thing to me remains, anyone is at risk, some just more so than others.

I’m no medical expert so I can’t really comment or put anyone’s fears to bed. As far as I’m concerned, people have a right to fear, a right to be relaxed, a right to have their reaction and emotions…to each their own. But, they should never do so by putting the lives of others around them at risk through their own naive beliefs or stupidity.

Personally, if I had to be honest, I wouldn’t like to become symptomatic right now where I require a trip to the hospital. It’s a known fact that hospitals are a breeding ground for germs and not the safest of places to be. I think now especially, it’s even more crucial, as so many infected people go in search of medical help.

I feel for all those infected, who have lost the fight and more especially for the nurses, doctors and so many other service men and women, who are putting their own lives on the line. A reality which sees them fighting an enemy they don’t have much information on and seemingly with most of the odds stacked against them. I salute you!

As people living with Hydrocephalus, we never know when our treatment option (shunt or ETV) will fail. We have no idea when the next brain surgery will be. Also, these surgeries don’t always go smoothly or according to plan. With ICUs filling up and more makeshift ones popping up in buildings around cities, there’s an even bigger concern growing in me. Worst case scenario, you develop an infection which would undoubtedly be exacerbated by a virus like COVID19…My fear right now! (Call it paranoia, call it what you will. As someone who has experienced exactly this scenario before, it’s not that easy to eliminate from my mind). Elective surgeries are being cancelled, understandably so.

It feels like the world is under attack…We simply have to comply and do the best we can to survive.

A Hydro sister had surgery a few weeks ago and had herself discharged soon after, I was taken aback by her decision, thinking it was too soon. In hindsight, and given the current situation, I think it may have been the best thing she could have done. Something I undoubtedly will do too, if the need arises.

Usually, after having diagnostic testing done, I’m keen to know if there were any findings of note. This time though, not so much. My report will only be available to me online, on the 7th of April and, I’m in NO rush to know the outcome. The surgeon has received a copy and since I haven’t heard from him, I’ll do what I hate doing, and assume that there’s nothing significant. For once, I’m happy NOT to be hearing from him. The prospect of brain surgery never did excite me but it’s even worse now. More importantly, the fact that the medical profession is inundated with those infected with this virus and fighting it at all cost, does NOT escape me.

More importantly, I feel for those of us with Hydrocephalus, who have no other choice, but to undergo surgery at a time like this.

This situation, which the world is facing, definitely forces you to look at life with some form of perspective. It forces you to think of others, to really think about what’s important and re-evaluate life in general. People have lost their jobs, many without food to eat, fearful of what happens next, the list is simply endless! At the very least, it’s a picture, which starts to form in its infancy stage as the reality of the situation takes hold. My prayer is that the efforts made by everyone, does in fact make a difference. That heads of states, countries and parliaments are armed with enough resources and knowledge to make “good” choices. (I certainly don’t envy their jobs right now). Note, I didn’t say, “right” choices because I don’t believe anyone truly knows what that is right now.

Seeing each country doing their own thing, watching the next one and either following or going in another direction leads me to believe there’s no clear direction. How can there be…?

Much like life…no one has the magic formula; we all just do the best we can to navigate through it.

Everyone has an opinion and they’re entitled to that but doing what’s best for you and your family, should be at the forefront of all that you do. Own your own safety and do what you feel is right for you. Therefore, staying in your “bubble” (as the New Zealand PM calls it), staying safe and self-isolating, would seem to be the sensible thing to do. If only containing the symptoms of shunt or ETV failure were as simple as that to manage.

Stay safe Hydro family. May God be with us all!