Life After Sepsis
The title of today’s blog sounds sensationalist but the fact is, in January my body and organs went into shutdown, according to the surgeon… was very close to death. I consider I’ve been extremely lucky, until this point, I knew next to nothing about sepsis… I know now that it is fast infecting and attacking your internal organs. If you think you have two or more symptoms of sepsis, don’t hang about and seek medical advice!
I have been hospitalised for a total of seventy-five days, yep that’s right 75 long days, during which time I have gone from being very poorly, undergone multiple surgical procedures, setbacks and disappointment to where I am right now (still not 100%). The hospital didn’t initially detect or suspect Sepsis, it was the intervention of WAY friends whom unfortunately had first-hand experience of this, suspected I had it and was pushing the hospital to test for it. The problem is that testing for Sepsis takes too long especially when you’re in a critical condition and need IV antibiotics immediately to start the treatment process. Although there’s new methods for detecting sepsis faster it’s not available yet to the medical community.
The Short Version
I had a high temperature, fever, infection, confusion, extreme fatigue, vomiting, breathlessness, lack of urine output, fast heartrate (160BPM), looked as yellow as Bart Simpson etc. and yet the hospital missed these classic Sepsis signs when they discharged me for the second time. It was friends who found me at home unconscious and sweating like a water fountain when I was blue lighted into hospital. I’d been discharged no more than 12 hours earlier.
Reflecting back on what happened, there was until a month or so before I became ill I would have happily joined my late wife, something must have changed, because had I not sent a text to friends with the last bit of energy I had, I would have died. Had I wanted to die I would of just fallen asleep. Therefore a part of me then must want to live, or my purpose in life has not been fulfilled. Though I was annoyed at the time my DNR was ignored by medical staff.
The first consultant (in my opinion) made a number of fundamental errors and erroneous discharges (Yes that’s right, discharged twice) that resulted in putting my life at risk, if I went through everything that’s happened in the last six months you’d think it so far-fetched even film makers would reject it being too unbelievable, but it happened and it bloody well happened to me. One day I might even fill you all in on the gory details…
I won’t kid you; it was extremely hard being in hospital for such a length of time, staving off pain, boredom, lack of sleep and without a TV or form of entertainment for the first few weeks. However, friends and my WaY Family supported me by rallying around such that I had visitors almost every one of those 75 days (some traveling some distance to the hospital), which is amazing in the grand scheme of things, especially as so many took their time to travel and visit. I received many get-well cards direct to the hospital ward and even “Care Packages” which included puzzle books, snacks and treats from fellow WaYers that I cannot thank you enough for keeping my spirits high. It was both a surprise, and really appreciated that people had taken the time to do what they did.
Additionally, a friend and WAYer went over and above co-ordinating and communicating with friends, WAYers and Work to keep everyone informed and UpToDate, acting as next-of-kin. Since Janice died there isn’t really a NOK that I can rely on. I recently found out that in the earlier days they had to prepare friends for the possible worst news when I was in intensive care as the surgeon and team didn’t think I would make it.
The surgeon recently said that my case was so rare and extreme that a paper has been submitted to the board and will form part of a study paper. The last time they’d seen a case like this was around 20 years ago in a 3rdworld country. At least someone’s happy with what happened, to be fair he did save my life!
I struggled with vision in the early weeks making texting/messaging extremely difficult, plus the pain relief medication was making me very drowsy, so who knows what nonsense I was saying. I suspect this was related to the anaesthetic and medications being taken.
After the initial Sepsis shock and surgery, my condition started to deteriorate quickly about a week after being out of ITU, I started losing my voice, becoming very weak, hot and cold sweats, and postural hypotension. My BP would drop to 60/40 when I stood up resulting in me fainting. It became frustrating as there seemed to be no end in sight. The hospital wanted to discharge me like this 😨 thankfully friends intervened… I was back on the antibiotics due to further infections.
On a positive note though I lost 4.5 stones in weight! so there has to be some benefits right? Meant I had to buy a new wardrobe of clothes!
You do get to see some horrific sites on a hospital ward and I have a new found respect for the nurses and the HCA’s that look after patients seeing some of the abuse and problematic patients they have to deal with, that’s a blog post for another day. The nurses and HCA’s looked after me very well, even decorating my bed bay on birthday. They were there for the ups and downs, truly amazing.
Today, I still suffer from fatigue, lack of focus and concentration, joint pain and pick up the tiniest infection etc. but in a much better place than I was in January. I was told it can take 3-4 months to recover from the effects of sepsis according to the surgeon. I hope so as it’s so bloody frustrating.
As a thank you to so many people I organised a local WAY Coffee and Cake meet where I would pick up the tab for refreshments and cake, and was surprised further by the generosity of so many people who’d bought me a welcome home set of gifts.
With all the crap we go through, there are some wonderful and amazing people who genuinely care, for which I am so grateful and humbled by. I know I wouldn’t be here without everyone’s support. To everyone who helped and supported me during this, I thank you, you’re all amazing people xxx
If you want to know more about Sepsis and Post Sepsis Syndrome here’s some useful links, if you know of more resources, please share them in the comments below.