It seems only yesterday when I was totally stressed out about the closure of BBC Backstage, trying to help Future Everything, buying my first flat on my own and goodness knows what else…
I assume this time last year is about the time Adrian got the call saying I didn’t have mengentis, instead I had a massive bleed on the brain and they were going to operate straight away, could he contact my parents.
It still makes me very sad that I put everyone through everything but then again I really wasn’t to know. The bleed was caused by having high blood pressure and although my size doesn’t help, its also in my family genes. Both my mum and dad have high blood pressure and to be honest I’d never really thought to ask them about it. Ever since, I’ve asked them all types of questions…
In my flat, I have had all the cards I received during my time in hospital up. It reminds me what happened and how I need to move forward. My parents would rather I had taken them down but I did say I would keep them up for a year then put them away for safe keeping. This is exactly why I’m writing this post I guess.
I know I’m one of the luckiest people on this planet. To survive a bleed on the brain (Angiogram) is one thing but to be able to walk away with little permanent damage is just something else altogether. I’m not one for religion but as my parents say, god must have been looking down on me that day.
The blow by blow
Over the next week the story of last year becomes a lot clearer in part due to my caringbridge site/blog, which was setup by my ex-wife Sarah, who at the time I was not on speaking terms with at all.
Ian had been feeling very unwell, and his flatmate and his boss convinced him to go to the hospital to get checked out. We were called on Monday 17th May and told Ian was in hospital. Originally they suspected meningitis. However, all we know at the moment is that he had a bleed on his brain. He had surgery that day to put a drain in and has been heavily sedated in the ICU at Salford Royal (aka Hope Hospital).
It all felt like a lot longer, it almost felt like I was in hospital months, but I guess thats the powerful drugs effecting my judgment and memory. I assume looking at the dates I was only in ICU for about 2 weeks.
I do remember this moment…
I spent most of the afternoon and evening with Ian today. They have taken him off the medication that was keeping him asleep and his condition is fair. He’s opened his eyes and is able to communicate with me by nodding. He is still on the ventilator but he is starting to breathe naturally. They want to keep the ventilator in for the moment in case he isn’t responding properly.
He had tears in his eyes while I was reading all the get well messages to him. So far he will only open his eyes when I ask him to, but he will not do it for the nurses.
I could hear my mum calling my name… And I woke up in a strange place mainly of white. My mum, dad and sister were standing over me. My mum asked do I know where I am? I shook my head and she said hospital. They read out a few messages I had gotten and I fell a sleep with tears in my eyes.
The next day (Saturday)… I remember slightly more.
Ian wanted to know what happened as he cannot remember falling ill; his sister has explained it to him. He then wanted to know what the doctors said so I’ve told him about having the bleed on his brain. He was listening and nodding to say he understood.
By Monday my mum certainly knew me very well because she wrote about my recovery, she did say to me later in the year that she knew I wasn’t going to be physically disabled because my legs and arms kept moving now and then while I was under…
I still feel very confident that Ian is going to make a full recovery. Today he smiled and squeezed my hand, and he laughed when we told him a joke. He knows where he is and recognises his family.
He is still quite tired and drowsy, but I am reading him your get well messages when he is awake enough to listen. Alvin and I had no idea how well known Ian is until we saw the messages coming from all over the world.
Yes I certainly remember trying to stay awake and learn more about what was going on around me but struggling to stay awake even during guest visiting hours.
I am staying at Ian’s flat in Manchester and am pleased that I have figured out how to turn on his television!
Good for my mum… I kind of forgot how alien it must have been for her, shes so use to just turning on the TV and sound coming out. While I had it setup so all the sound on the TV is muted and comes out to the cinema amp instead. Luckily I changed the Sherwood amp to the Onyko amp sometime before otherwise it would have been impossible to work out.
Tuesday, and I’m wondering about Google IO 2010 and was in tears to hear about what Jeremy Keith did for me…
I held up some of his cards and messages for him to read. Ian wrote on a piece of paper asking for an article about Google, and one had been sent to him so he got to read it (thanks to the sender!).
The doctors are hoping to to take him off the ventilator again tomorrow and see how his breathing is doing.
On Wednesday Ant/Adrian posted this blog post on the Backstage blog. While Thursday…
Ian’s ventilator was removed again this morning. To avoid having the ventilator back in, he has had a tracheotomy to help him breathe. This is just a temporary measure until his breathing is stabilised. The drain has been removed from his head, so now it is just the feeding tube in his nose.
I remember the tracheotomy, in actual fact I’ve still a year later got the scar from where the hole in my throat was. The Feeding tube in my nose was very strange. I remember when the nurses would change the feeding stuff to something sweeter and my nose would almost tingle as it slowly got pumped down the back of my nose.
By that weekend (last weekend of May)… I think Ross and Carly came up to see me and my mum wrote this.
Ian’s dad, sister and I have been back in Manchester with him since yesterday afternoon.
The trach tube had to be resited and Ian is still having some ventilation through that just until his breathing improves. They are reducing use of it and he is mostly breathing on his own.
Ian’s sister has been reading him messages from the guestbook which are much appreciated. However, at the moment we would still like visitors to be limited to family. Ian is having ups and downs in his recovery, but on the whole is improving. We want to make sure he rests and does not get frustrated with not being able to speak (this is temporary due to the trach tube). He is communicating with us by blinking, nodding and occasionally writing, and he does understand everything that is going on.
The messages and cards were overwhelming… They really helped me. I remember thinking I can’t believe the amount of peoples lives I’ve touched. Not being able to speak was a nightmare… my sister (bless her) came up with a system for communicating but what she missed was the fact it was based on speaking language and so required far too much effort to make it useful. My frustration was clear but I was able to somewhat laugh with Ross and Carly.
I’ll leave the walk down memory lane there for now… but its worth poping along to Thank you part 1 and Thank you part 2 which cover my thoughts and thank you’s when I left Hospital.
Life goes on
Now one year on, my life has totally changed around. I’m doing a lot less but also going deeper in certain areas. I’ve decided to leave the open data movement to its own momentum. I’m now full of creative ideas which I keep writing down in Evernote for future use. Some of those ideas are to do with the BBC and some to do with other aspects of my life like djing. I’m also less likely to hold on to them, which fits nicely with my need to use less brain cycles.
I’m living much more of my life publicly, trying to hold back requires effort and brain cycles so unless there’s a very good reason, I tend to share it. I’m also less guarded with information about myself, heck I’ll pretty much tell anyone about my experience with the bleed.
I also have a total new appreciation of our brains and the system which keeps it ticking over. I’ve of course taken advantage of mine to trick it into thinking giving blood and injections are not as bad as they should/could be via hypnosis. Also a better understanding of the need to stay fit, healthy and have a very positive outlook. I really hate to see life being thrown away, even more so than before.
Generally my brush with death has changed me in many positive ways and I never want to end up back where I was. Although I’m thinking about popping back into the hospital to see some of the nurses to see if the changes I complained about have actually happened or not… But thats for another blog post later in June.
Its certainly time to stop the #mybrushwithdeath thread. Archive and move on but never ever forget…
The pulse of a nation mix by cubicgarden
I had a listen to all of my mixes I recorded while in Hospital, and this is certainly the best mix of them all.
This one is certainly the best sounding of the bunch which includes the the amazing recover mix, the outta of hope mix and of course the pulse of a nation mix. Its a good length too at almost a hour long. The mixing isn’t perfect but its good enough for a listen. The choice of tunes is also good, a nice upbeat selection, I must have had a good day the day I recorded this mix. As always enjoy it… oh an you can directly download this mix using this link.
- By your side (martin roth remix) – the thrillseekers feat gina do
- Strange bends (kyau vs albert) – Sebastian Sand
- Grooveline (matt darey) – Blockster
- dark side of the moon (marc van linden remix) – Ernesto vs Bastian
- Intution (martin roth remix) – Marninx pres ecco
- the truth (david west remix) – Headstrong feat Tiff Lacey
- Circa Forever (R.E.mix) – Rapid eye
- The wave (svenson & gielen remix) – cosmic gate
- a new dawn (virtual vault remix) – steve forte rio
- So much – Vince Nysse
- Ultracurve – cosmic gate
The outta of hope mix by cubicgarden
I had a listen to most of my mixes I recorded while in Hospital, and there some good stuff there. Its going to take a while to recover and make them decent for sharing because sometimes I had the cross fader in the wrong position which is a shame or forgot to do something equally silly. Anyway here’s a nice short one to kick us off. As always enjoy…
- Above the sky – Airwave
- Cafe del Mar (Marco V remix) – Energy 52
- Are you fine – Kyan vs Albert
- Sincere (pulser remix) – Firewall
- Language (santiago nino dub tech mix) – Hammer and Bennett
- Shadow World – Thomas Brozwaer
- Lately (Riley & durrant mix) – Airbiscuit
- She wants him – Moussa Clarke & Terrafunka
- Into Something – Richard durand
- The Blizzard (Monogato’s Filth Remix) – Kalopsia
- Gamesmaster (matt darey 1999 remix) – Lost Tribe
While I was in Hospital in a Coma, I dropped the ball on quite a few things including a couple of Ebay things I was selling. So I find out that the person I was selling a computer too didn’t get the computer, actually it was still in my room. But I had already cashed the Paypal transfer a while ago. So I had not sent the computer but I was going to, I bought a box for it and everything to go in the post, but had not gone through with the actual post part. Then that weekend the bleed on the brain happened and I was in hospital for 4 weeks.
This wouldn’t be a problem if the didn’t tarnish my perfect 100% reputation with a negative comment for something I had no control over. I’m not saying he was in the wrong, as far as he was concerned I had bagged the money and not answered any of my emails since. I guess I seemed like a scammer and he did the right thing asking ebay to return his money.
The problem I have is since returning to the real world, its not possible to appeal against the decision. Even with all the best intentions, nothing. I’ve tried contacting the buyer and now I’m looking for the ebay email address to appeal the decision. If I could just get through to someone, I could show them the caring bridge site which would also prove what I’m saying is the truth, Heck I even have a sick note if it goes that far.
Its not so much about the money, I’m happy to give the guy back his money, its about my reputation, 100% to 85.7%.
Here’s how it went from there end.
- 05 Jun, 2010 at 14:48 eBay Customer Support has refunded the buyer and the case is closed. You must now reimburse eBay for this refund.
- 05 Jun, 2010 at 14:45 The buyer has escalated the case to eBay Customer Support.
- 04 Jun, 2010 at 06:18 You should have responded to the buyer.
- 25 May, 2010 at 06:18 The buyer opened a case: Item not received
I finally found a email to contact ebay to contest the case.
My ex-wife rewrote my rant about the Hospital into something official sounding. I think you will agree its much better that my efforts. It sounds kind of weird my ex-wife helping me out like this but shes been excellent the last few weeks helping out where ever she can. So we’ve really made up and who knows we may actually be friends following this. Its a shame it took this to get us to talk but its a positive which has come out of this whole experience. I even met her little son the other day which is slighly scary because I didn’t know quite what to expect.
Anyway, here’s the letter we’re using for the complaint to the hospital (I’ve been told not to put the name of the hospital, just in case they are checking the internet for complaints or something) If you’ve been paying attention, you will know which hospital it is…
Following my verbal complaint at my discharge on 17 June 2010, I am putting my concerns in writing so as to be clear about the matters I believe need attention and/or investigation.
1. Lack of information to family members in ICU
My family was unhappy with the amount of communication during my stay in ICU. Some nurses would come along and do things but not tell my family what they were doing or why. My parents received next to no information about what had happened to me or what my prognosis was. In one instance, my mother was treated to an inappropriate lecture about hospital pay instead of getting an update on my condition. They were not encouraged to ask questions and generally felt uncomfortable approaching some of the staff. The consultant was never available and my family ended up having to book time with him several days in advance just to be able to speak to him. They (and I) feel more should have been done to make sure they understood what was happening.
2. Problems with ward management
After I left ICU, I was moved twice within two days which was very unsettling. It seems that no one knew quite where to put me, so the first ward I went to proved to be unsuitable, and in the ANU I was with people who were pre-surgery while I was recovering. Maybe there isn’t really a suitable ward for my situation, but I would have thought it made more sense for me to be with other people who are recovering from surgery (oppose to a medical ward). I also did not receive any sort of ward orientation and was not advised until several days into my stay that I was permitted to leave the ward.
One particular problem with my ward was another patient who needed constant care and attention and didn’t receive it from the staff. As a patient, I should not have to look after other patients, but I felt obligated to help as the patient next to me was constantly trying to get out of bed (risking a fall), trying to pull his tubes out, and asking me ‘when are we going?’ On most days, I had to call the nurse to deal with him several times, sometimes every five minutes, to stop him from hurting himself. I found this very stressful and certainly not what I needed with my already high blood pressure.
3. Missing medication
The most serious complaint I have about my time at the hospital is that I was not given my medication, though it was signed off in the chart that I’d received it. On 16th June the chart was signed in the morning, but I am certain I did not have the pills. There was one pill that was very bitter, and I have to be awake to take it, so I am absolutely positive it was not given that day. I am also certain that there were other days I did not get my pills. On the afternoon of 16th June, I told a nurse I hadn’t had my medication. She looked at my chart, saw that it had been initialled, and dismissed my allegation with no further investigation. The ward sister was told, seemed unconcerned, and did nothing. When the night nurse came on shift, I also told him I hadn’t received my medication, and fortunately he believed me. He opened the medication box and found that my blood pressure medication pill packet was empty. This begs the question, how many doses did I miss? Why did the morning nurse sign that I had my medication when I didn’t? Why didn’t the person who used the last pill arrange for more to be sent from the pharmacy? Why didn’t the afternoon nurse and ward manager investigate my allegation immediately? If they dismissed my allegation because they thought I was having memory problems (which I wasn’t), why didn’t they do something to prove to me that I was wrong (which, as it turns out, I wasn’t)? Without those tablets, I was at serious risk of a relapse. I am thoroughly disgusted that whilst I was at a vulnerable point in my recovery, the hospital’s medication management procedures allowed me to go for days without essential medication. This is serious medical negligence and I will expect to be informed of the disciplinary proceedings that surely will arise from this matter.
4. Lack of care/attention to special patient needs
I have a serious needle phobia which I made everyone aware of. When I’ve had hospital treatment for other conditions (including an operation needing anaesthetic), they were very accommodating as far as helping with alternatives to injections (i.e. using gas to put me to sleep before any IV was started). It was written in my chart that I am terrified of needles and should be approached with care. Until I was well enough to protest, I was given heparin injections in my stomach. I was told this was very important to prevent blood clots, but when I said I didn’t want injections this was taken as though I’d said I didn’t want treatment. I was willing to take alternative treatments, but as discussed below, my doctor was never available to ask about possible alternatives.
5. Lack of communication and attention by the doctor in charge of my case
After leaving ICU on 07/06/2010, I only saw my doctor once. The other patients on my ward saw their doctors on a daily basis and were told what was happening with their care. On the one occasion a doctor did see me, I still wasn’t told what was happening. After social services assessed me as fit to go home, I had to wait for 3 days to be discharged, ultimately by a different doctor because mine was never available. When I complained about this after my discharge, my doctor who we (me and my mum) had never seen admitted he hadn’t even realised I was still in hospital; he said he thought I’d self-discharged. Then he stated he had been ‘following’ my case, but had no answer when I asked how that was possible when he didn’t even know where I was. Basically, for three days I was taking up a bed that someone else could have used because my doctor didn’t know where I was and the ward staff didn’t seem to be able to communicate this to him, despite the fact that he was in the same building. I had been left in the ward to hopefully get better.
6. Lack of respect for patients and their visitors
Visiting hours on my ward were restricted to 2.5 hours per day, and that time is very precious for patients and their visitors. On one occasion whilst my mother was visiting, a nurse interrupted us and insisted that I put on a nebuliser mask. The nebuliser mask makes it impossible to speak to your loved ones, and there was no particular reason it had to be done at that exact time. It was very rude, and for the sake of an hour this nurse could have waited until visiting hours were over.
Additionally, I felt ignored most of the time I spent on the ward. The nurses were friendly to the other patients and addressed all of them by name, but for some reason I was left out. Perhaps it was the fact that no one seemed to know why I was there or what was supposed to be happening with my care due to my doctor forgetting about me. I was quite surprised when I was told by one nurse that she didn’t even know what had happened to me. I thought that was essential bit of information when a nurse is going to be caring for a patient.
In summary, the time I spent at the hospital was very disappointing for me and my family. The overall lack of communication meant I stayed in hospital much longer than I should have and that caused a lot of distress. With all the people that were supposedly contacting the doctor on my behalf (PALS, the ward manager, nursing staff), I do not understand how my doctor could ‘forget’ his patient is languishing on a ward. I have huge concerns over how medications are managed and I am appalled that when I brought the matter of my missing medication to the nurse’s and ward manager’s attention, I was not taken seriously. For a more non-communicative patient, mistakes like that could be a matter of life or death. I certainly feel safer out of that ward where I know that my medication is my responsibility and I do not have to depend on negligent medical professionals to get what I need.
I do expect a thorough investigation of these issues, particularly with regard to the missing medication and my doctor’s neglect of my case. I look forward to hearing what steps you will be taking to ensure my experiences are not repeated with other patients.
Thank you to the whole of the ICU ward including Nicole, Sarah and Shelly who looked after me while I was in ICU (say my parents because I was obviously sleeping) They explained to my parents exactly what was going on and with such compassion plus they sympathize with there position unlike nurses later on the stroke ward. I was out of it but you made a dent in my parents memory that they remember you all. But I would be wrong to just rule out all the nurses on the stroke ward, there were some good apples mixed in with the bad ones. Ginger was great, there was also a bunch of male nurses which were excellent and ever so witty. I will never forget the male nurse who ran half way to somewhere to get my pills for the last night. He was totally out of breath by the time he returned. Oh and how could I forget the dinner ladies, good fun and always got a hi from them.
Thanks to everyone who wrote to me on Facebook, you all know how much I hate facebook but these were worthy of a mention and a thanks.
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