Those who frequent the ChemConnector or ChemSpider blogs, or have these plugged into your Readers will have noticed a sudden silence from me in the New year. It was one of those “phone calls you never want” calls. My mother was rushed into hospital with a subarachnoid hemorrhage. That is NOT a bleeding spider deep in her waters (get it? A sub arachnid hemorrhage…) but a bleed in the brain. It is a form of stroke and as Wikipedia so nicely states (scary) “Up to half of all cases of SAH are fatal and 10–15% die before reaching a hospital”. My mother made it to hospital thanks to the valiant efforts of my sister who had experience of exactly this medical emergency since her friend had SAH just over a year ago. By the time I got home three days later my mother was safely at the Walton Center,supposedly one of the best neurology hospitals in the UK. When I walked onto the ward for the first time after a red eye flight from the US and no sleep for about 30 hours, my mother was awake, but tired. She was bruised from all the lines running into her and had a drain running from her head to a bag draining fluid from the brain to prevent hydrocephalus. they must have been collecting over a half litre of fluid every day or so. Whenever I was there the bag was full of bloody fluid and seemed to get drained regularly. It’s very concerning and emotional for any child to see their parent in such a state….
In the first couple of days she was talkative but sleepy. With SAH it’s the few days following the event that are particularly telling and dangerous. No different in this case. All hell broke loose as she headed down from the normal ward and down to the High Dependency Unit (one nurse, per two patients) one day. We received a call and when we arrived she wasn’t conscious and non-responsive. Within a few days she had declined and had moved to the critical care (1 nurse, 1 patient it seemed) ward as a result of the drain from her head blocking and a build up of fluid, heart arrythmia, low blood pressure and an infection. They made a 6 inch cut across the scalp, drilled a hole into the skull and ran a fresh drain into a ventricle of the brain. The next three days were emotionally and physically draining (3 hours a day of driving and not knowing whether she would be able to talk that day or not or even know who we were. By the time she got back to High Dependency (who would have thought that would seem like a happy day…but after critical care it is!) she was on seven drugs, had mainlines running into her femoral artery and later the carotid artery. She was bruised and bandaged, cabled, wired and clearly in distress. At one point her eyes communicated “Enough…I can’t do this anymore” and it was one of the hardest moments of my life…but a singly defining moment in the nature of my relationship with my sister and my mother…and how closely connected we are.
During that period the doctors performed endovascular surgery to insert a coil as described in detail here. 
My mother now has Platinum in her brain and without it would likely not survive. The stress on her system would not been conducive to her surviving a more invasive surgery. When I left the UK, after almost 3 weeks, multiple changes to my flights (and lots of charges from United airlines!) my mother was off of all drugs, sitting up, had just drank her first glass of water in 7 days (she was on a nose feed for food for a long time and was receiving intravenous fluids the entire time) . I’ve been home almost a week and she is now eating soups, drinking hot drinks, can get out of bed and is learning to walk again…after three ways in bed there is a lot of muscle atrophy.
And so to the National Health Service of the UK. I have heard MANY nightmare stories and experienced some myself when I lived in the UK. However, I’ve lived in Canada and now live in the US. I have nightmare stories and experiences in both countries. Those stories are for another time… What I can say is that the treatment my mother received was outstanding. Her nurses and doctors were phenomenal. There were not only skilled at their jobs but sympathetic to us at a human level, listened to us when we were concerned and educated us when we asked. The coiling procedure is not available in every hospital and is state of the art surgery. Bottom line is my mother nearly died the moment the hemorrhage happened (50% of people do!) and, in my opinion, she went to the edge and back a number of times in 3 weeks. The medical staff clearly saved her life and I and my family are indebted to them for the treatment and the experience. one concern we didn’t have to deal with is “cost”. Even for the most mundane procedures in the US there is a cost concern. Having visited friends and hospital members in hospital I am conscious of the “how much per pill” mentality that persists here. Based on what I saw happen to my mother, and the 4 weeks of hospital stay to come and months of rehabilitation to follow my mothers treatment and recovery in this country would cost well over a hundred thousand dollars..probably more (maybe some one can give me an inform guess?). In the UK the National Health Service assumes those costs. There is no bill to come that we need to worry about. The focus can be on the patient, their rehabilitation and care. In this country I have sensed and discussed with some close friends the mentality of “what is a life worth?”. What child wants to be put in that situation?!
And so my plea to President Obama. “Please stay on task with your intentions to provide affordable health care for all families. Rich or poor none of us want to be faced with the challenging questions associated with the mentality of “What is a life worth” that will prevail unless health care costs are brought under control in this country. We have research investments in this country which have delivered incredible technologies to preserve life as we are threatened. We have drugs to support and enhance life when burdened by sickness and slowed by age. Yet, for many, basic healthcare remains out of reach. It is past the time for change. The majority of the populace, whether they voted for you or not, will lend their support to you to make the necessary changes. The world is watching and you can lead the change in healthcare. You have my support.”
My best friend is right in the middle of the challenges of “commercialized health care” in the United States. Jeff is a wonderful man and one of my life mentors. He is at once incredibly intelligent, thoughtful, caring, challenging and motivating. He is presently struggling with a health issue of his own and is about to enter into the challenges of dealing with the costs of excellent care, some of the (in)adequacies of the system, and going under the knife for a very scary yet incredible surgery. He has the blog American Citizen and is about to start posting videos about the challenges he is going through. Knowing Jeff they will be witty, amusing and straight to the point. Check out his blog and watch out for the movies.
I was recently privileged to co-author a book chapter entitled “Beautifying Data in the Real World” in a book called Beautiful Data, available shortly from O’Reilly. The list of authors is likely known to readers interested in Open Data and Open Notebook Science: Jean-Claude Bradley, Rajarshi Guha, Andrew Lang, Pierre Lindenbaum, Cameron Neylon, Egon Willighagen and myself.![Reblog this post [with Zemanta]](http://img.zemanta.com/reblog_e.png?x-id=312bd8f3-bdc5-4891-a540-e2d7abad2539)
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