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So many people have asked, ‘What’s wrong with you’ and ‘Why are you still in hospital?’, (I’m out now) that I thought a small blog might help. Don’t get me wrong, there are many people, including on this site, who have had worse problems, often for longer. But I’ve never been this ill, so I’ll press on.
In the beginning, at the very tail end of February, some sort of bug hit me. I had no idea what it was, but it wasn’t like anything I’d had before. In less time than a bubble takes to burst, I had almost no energy, no appetite, and felt generally awful. If I wanted a shower, I had to drag myself up by the banister rail, then rest for ten minutes on the bed. I couldn’t stand for the shower, so we put a stool in. Then I began to experience moments of delirium. I just about made it into the GP’s surgery from the pavement outside where a blood test revealed a bacterial infection, and by the next day I was on antibiotics. I came back—sort of. I got worse over the next two and a half weeks or so until on a Friday in March I came downstairs and fell onto a settee. My wife began to worry about the way I was looking and speaking. She also worried about it being Friday with only 111 for help. So she called an ambulance. This saved my life. Amazingly, they came, and straight away realised it wasn’t the sniffles.
I was admitted to hospital.
Clinical diagnosis (presenting complaints)
- Septic shock with multi organ failure on admission
- Portal vein thrombus + SMV thrombus
- coli bacteraema of uncertain source (intra-abdominal felt most likely) with liver abscess despite improving on antibiotics.
- Worrisome ileo-colic nodes and caecal wall thickening – concerning for new Gi malignancy, will need endoscopic evaluation when stable.
Number 1 is fairly obvious. Number 2 needs a bit of unpacking. The Portal and SM (superior mesenteric) veins carry food-rich blood from the gut, into the liver. Somewhere in the vicinity of my stomach, something is amiss. A very large “sticky” blood clot has formed, a thrombus. Not content with this, that area has sent out a raiding party of another clot, blocking both those veins. Fortunately there are two more veins that are free, and I now gobble blood-thinners to stop more clots forming. Number 3 was just plain bad luck. Did I put my hand on a railing? Was it was in the air? Its action on me was atypical in its severity, creating abscesses in my liver and lungs. I’ve been on a huge course of antibiotics and still have a sixteen-day course to get through. Number 4 is the scary beast. I’ve been too ill, or frail to be tested yet. That’s in the near future.
I was so ill when admitted, that they were reluctant to intervene in case that itself killed me. Then, with clear signs that I was about to finish the job myself, they started me on a very strong antibiotic called Piperacillin/tazobactam, which is itself a risk. I came back to life.
There are bits missing, the main one being that I’m anaemic and low on iron
I won’t bore you with details on the next three weeks, just a skim. It started badly. Not only ill, confused, and hallucinating, at night I was woken up every 60 minutes to have my blood pressure and blood sugar level tested. I also had some new drip fitted, usually just as I was dropping off. I missed the pain and indignity of having a catheter fitted. I was unconscious. I was wide awake when they removed it – and even more awake just after. Blood tests? So many that they ran out of veins, and I had a line fitted to my neck. It wasn’t perfect though and was removed quite quickly. I went through 17 cannulas. One nurse wanted to fit another right at the end of my stay, but all the suitable-size veins on my arms were wrecked from other cannulas, injections, or blood tests. I was only taking one cannula medicine then, and it was switched to a tablet. Needless (Ho ho) to say, an even more popular move to a pill was my blood thinner, which was previously delivered, evening and morning, as a deep muscular injection directly over the stomach.
It got better. Fewer checks, fewer injections, and so on. I started exercising to try to get more mobile and a bit stronger (not fit, no discharge) under supervision.
Ooh, ooh! Before I forget. No more body rigor. This is a kind of fit which happens because your body thinks you’re too cold, often because it’s cold outside even if your temperature is bang on normal. Horrible to watch—worse to go through. Intense involuntary muscular spasms that can move teeth; almost-uncontrollable, violent trembling and shaking. I had one on my first ward after the High Dependency Unit. It was charming the way the nurses tried to calm me, but the doctors asked me to tremble less because they needed some blood.
Then one day, when I thought I was stuck for another two weeks, my doctor walked in and said, ‘Do you still want to leave?’ I said ‘yes,’ and he said, ‘How about now?’
So I’m home. On my honour to stay downstairs. I zoom around on my crutches, which are easier than a frame, as we live in a real house, not a mansion.
Some funny/weird bits:
When the ambulance arrived at our house, I was slipping in and out of consciousness. I had the vague idea it was night, although it was late afternoon. I thought I should take a nap. A rude voice woke me up, bellowing ‘William’ from close range. I opened my eyes and saw a face staring at me. I had no idea who this was. Then a woman shouted my name as well. I could hear the roar and rattle of some diesel engine nearby.
‘Leave me alone,’ I muttered. ‘I’m fine.’
‘William!’ the man bellowed again. ‘You’re not fine. You’re very ill.’
My last thought before unconsciousness. ‘Oh God. What are the neighbours going to think?’
*
When I finally came to in the hospital, my bed was rolled over to one side near a window. There was a huge mezzanine with lots of very strange people, some dressed as nurses. I thought that maybe I was on a ship. Then they had a party and wouldn’t respond when I said, ‘Excuse me.’
The whole thing was very odd, and I fell asleep.
In the morning, the weird people were milling around as ever.
‘Tell me what’s going on!’ I shouted. They didn’t answer, and I realised they didn’t like me. A couple came down, and I said, ‘You have to let me out. I need the toilet.’ One went away and came back with a large papier mâché hat. She pulled my sheets back while the other rolled me to one side and the hat was stuffed under me. Incredibly uncomfortable.
‘It’s OK to go now,’ said the one who rolled me back. They both walked away, but before they reached the steps, I announced, ‘Finished.’ It was the most defiant gesture I could muster.
The one I shall call “roller” stayed with me and washed my face, asked if I knew where I was, and was generally nice. As the sun came up, the coats that had been hanging by the door vanished, and the mezzanine became a room with beds and perfectly ordinary people in them. I realised that this was a nurse looking after me. The sense of relief, even though I had no idea where I was, was incredible.
*
My first general ward. Too soon, in the opinion of some nurses. Had a nice chat with B—(older than me). I realised that the majority of patients had diabetes, heart disease, or some variety of breathing problem, and I did wonder about the wisdom of putting somebody with an active infection, a bad cough, and diarrhoea in with them.
Then, I had a body rigor.
The room filled with slightly panicked people.
After the fit had passed and I was lying exhausted, B— revealed his secret.
‘Nurse!’ he shouted desperately. ‘Oh, please help me’ And so it went on, even after several nurses had visited. Finally, he resorted to screaming. While the other patients tossed and turned and moaned.
My great luck was that the staff shared my views about my condition, and the following morning I was moved to a side room where I remained.
*
One night I woke up and realised I was just on the point of another body rigor. Too late to do anything about it as the spasms had begun. I pressed my bell for help, but it was a very busy night, and I soon realised I’d just have to deal with it myself. I began my routine of focusing on one area, say wildly shaking arms, until I could get that to subside. Then I’d switch to another. Then back to the arms which had restarted. A full twenty minutes after the bell, the poor nursing assistant arrived. I was in full flow, and I could tell she was starting to panic. But it’s very hard to speak during a body rigor.
‘What’s wrong with you?’ was her first question.
After several attempts, I managed, ‘Cold.’ She put every blanket in the room on top of me. The fit continued unabated by the weight of polyester and wool, and finally she dashed off to summon help. She returned.
‘What do you need?’ she asked desperately.
At this stage, all I wanted was some calm company, but ten minutes after her arrival, I felt the first signs of the fit fading away. Then a doctor arrived, took one look at the mountain of blankets and, thankfully, pulled most off me and checked my pulse and breathing.
‘I heard the others lasted around half an hour,’ said the nursing assistant. ‘This one was better—only about ten minutes.’
*
So what now? I’m getting fitter and stronger. I have an appointment as an outpatient to make sure the antibiotics are clearing the abscesses where E-coli lurks. And after that—well, I know for certain that Number 4, the scary one on my admission notes up there near the start, will have to be tested for. Then, whatever will be, will be. I had this explained to me with all the possibilities quite early on and I’m reconciled with it.
For now, I’m at home and happy.
Postscript
I lost nearly two stone in weight over six weeks. Do NOT adopt this as a diet method.
My blood pressure, without any drugs to help, is perfect after years on a fistful of pills failed to bring it under control. As with dieting, don’t try this at home.
Nurses are some of the hardest-working, most patient, tolerant, and kindest, people I have ever met.
My wife visited me five times a day bringing suitable portions of food to overcome my illness-related anorexia. I couldn’t have managed without her, and still can’t.
Hell, Ath, this is too much for one person to put up with, and must have been (and continues to be) very frightening. I really do hope that the ‘frightening bit’ is treatable, and that you get an upturn in health very soon. Thinking of you loads and sending positive vibes your way.
Crikey Moses, William, I’m heart-heartedly glad to hear you are home and hopefully on your way to some sort of recovery – what a torrid time you and your family must have gone through, and thank you for updating us so vividly.
Sendng love and the most healingest of good wishes
Sandra
Honestly, nobody wants to get ill and go to hospital, but I don’t regret having met the staff. From the cleaner who I talked to a lot, to the nurses who tirelessly carried horrible pots away without a single complaint, to the consultant who (I now see) was joking/hinting about discharge when she said, ‘We must get this catheter out, unless you use one at home.’ they were all cheerful and friendly.
Oh my goodness, Ath, what a time you’ve had! I am so glad to hear that you were well looked after in the hospital and are now home. Thank goodness for Mrs Ath’s quick thinking!
I hope you are taking things easy and making good progress. It’s great to see you back at the Den. Sending very best wishes for a speedy recovery 🙂
I’ve always found the same, right up to last week with the theatre nurse who held my hand while my eye was bring anatheasised for an op. bless him. (all well post op.)
What an experience! I’m just glad you’re home and on the mend. Credit to you for maintaining a positive mindset and to Mrs Ath for being amazing!
Not sure if you know, Ath, but positive feedback for specific nurses ‘Natalie did this, Esme supported me with that’ can be used for their revalidation. Just saying. ☺️
Heavens, Ath! I’m glad you (and Mrs Ath) are now recovering. Thank you for telling us what you’ve been through. Take care and take it easy.
So glad to see you back, Ath – I was beginning to be afraid we never would.
And as it turns out, we nearly didn’t. My God, what a time you’ve had. All my best wishes for your continued recovery, and I do hope that the issue still hanging over you turns out to be not too catastrophic.
Thanks for all the kind wishes. Please don’t think me rude that I haven’t responded individually. I still find messaging quite an effort. Your words are very much appreciated.
I have only just happened upon this.
Oh my goodness, Ath – what a horrendous time you and your wife have been through. Sending positive vibes and very best wishes for a steady road to recovery. Be very gentle on yourselves. Jill
Thanks for the kind wishes, Jill. I know you’ve had your own burden lately, and I was so pleased to hear things were going well. At the moment, progress is good. I’m not using crutches or a frame now around the house and I can make it upstairs 2 or 3 times a week for a shower, all approved by the health visitors. I still have anaemia and run out of breath quite quickly though. I can’t start treatment for that just yet, so I’ll have to put up with it.
Tests for the scary beast start with a long appointment on 11 May.
Bloody Norah! (Sorry, Norah.) I have also just happened upon this. How ghastly and scary. Some aspects are all too familiar to me after a 2 week stint in hospital with evil pneumonia a couple of years ago. It’s surprising what a state we can innocently get into with no idea we are quite so ill until suddenly the ambulance has to be called. I’m glad it was, and glad they have sorted you out up to this point. I hope further recovery goes smoothly and there are no horrible discoveries awaiting you with regard to item 4.
Thank you.
Glad you are seeing progress in several ways. Long may it continue!
Will be thinking of you on the 11th. Jill
A bit of a close call. I hope the recovery continues steadily. It’s a bugger this getting old, that’s when we mostly get these brushes with danger.
Anyway, I just thought I hadn’t been here for a while and I should look in. This was up front. Take it steady and get well.
I hope that this is a footnote, although I forsee a few more tests from my GP.
Today I had the endoscopy which I believe some of the doctors in my hospital thought would show cancer. The symptoms were all lined up. There was even consistent evidence from CAT scans and other X-rays. To be fair to them, they never said that, though they always pointed it out to me as a distinct possibility. When they invited questions, and I asked about the liklihood it was always confirmed as something I should prepare for. Alternative causes of the symptoms were never discussed, or received a sceptical hearing.
There’s something of an omertà amongst hospital doctors. They like to appear, take pulses, listen to lungs, press bits of you to see if it hurts, and then with your mind in a whirl over all the activity, ask if you have any questions. ‘Feel free to ask me anything that occurs to you’ they say as they disappear leaving no direct route to contact them even if you could remember their name.
So it was with some trepidation that I went to the colonoscopy suite this morning. The gastroenterologist who saw me was a cheerful man, who was straightforward with me. ‘Is that gas and air doing anything for you? No? Don’t bother with it then.’ Afterwards he rushed up and straight away said, ‘That all looked fine. No trace of cancer, just a few benign polyps, and not very big either. You’re off the cancer path.’
Relief is an understatement. The very first doctor who ran through my symptoms with me said that he had to be fair, the possibility of my dying was in the mix, so I was reconciled to that outcome. But it was amazing to have it taken away.
That leaves my blood clots and anaemia to explain. And, hopefully fix. I have nothing more from the hospital, so it’s back to my GP later this week. The hospital doctors may be relaxed about leaving the clots where they are ( I think they felt it wouldn’t matter) but I’m not. I also don’t enjoy running out of breath after moving around for a few minutes, so that’s on my hit list.
I have things to do.
Good morning ~ such good news about no cancer. I am very pleased for you and can well imagine your relief on being told.
Now to get the other issues fixed very soon …
I had blood thinners for 6 months as the Lymphoma had caused clots on my lungs, so perhaps your GP might prescribe those? Just a thought, as every case is different. Worked for me anyway thank goodness.
Best wishes. Jill
Hi Ath, this is great good news. What a relief it must be. I hope you’re able to resolve the remaining issues. I hope you can get out and about a bit too, especially now the weather is improving.
Take care.
Thanks Jill. Yes, it is a big relief.
I’ve been on blood thinners (apixaban) since I was admitted to hospital. My problem is that the hospital doctors didn’t share any plan for dealing with the existing clots which have blocked two major veins to the liver. I strongly suspect that they were anticipating a worse outcome from the endoscopy and intended to deal with the clots when they dealt with that.
But that’s an issue for tomorrow (literally) when I see my GP.
Hi Libby, a very big relief. And thank you. I had another read through my discharge notes. I don’t think they’d seen somebody so ill with such a mixed bag of symptoms before (who hadn’t been in an accident). They took advice from the teams at Guildford, Reading, and Kings. There was a consensus to deal with the immediate emergency which was the E-coli infection and set the rest aside until I was stable. I think the latest test was only the first step in the second stage. I have no idea what comes next, although I’m fairly sure my GP will have me on iron tablets straight away.
But I’m out, at home, and happy about that!
Thank you for explaining. I will keep everything crossed that you get the answers and treatment you need from the doctor. You must be a real fighter to have come as far as this with what your discharge notes have revealed. Impressive! I trust your determination now to push for answers will pay off.
So glad to hear this, Ath, and let me add my hopes to those already expressed about the resolution of your remaining issues.
I have been on blood thinners for several years as I have atrial fibrillation, which is an irregular pulse, or as my GP put it with her customary no-nonsense bluntness, ‘a hoppitty heartbeat.’* This can lead to clots forming in the heart which may then travel to the brain and cause a stroke. AF, as doctors usually call it, also causes shortness of breath, so I am with you on that one too.
* My GP shares not only her name (Rebecca) with my favourite character but also her sexual orientation and her fondness for calling a spade a spade. I think this is coincidence, but maybe my sub-conscience was at work…
This is such good news, Ath! The relief must be a huge weight off your shoulders and hopefully that has boosted your energy levels. The iron tablets should make a big difference too.
I do hope you are able to resolve the outstanding issues swiftly and then make some plans to do something special after all you’ve been through 🙂
On a small scale, my daughter gave me a voucher for a foraging/cooking day for 2, for my birthday last year, and I’d just booked a day in March when I got ill. When the company heard I was in hospital, they gave me a six month extension on the voucher for free, so that I could book when I was completely recovered. I thought that was really thoughtful and I don’t imagine many companies would do that.
On a larger scale, we were going to celebrate my 70th in June with a trip to Pompeii. I’m not likely to be recovered enough for that, but we may well think again when autumn approaches.
I have some blood tests booked to determine my iron dose, and a referal to a specialist to see what to do about the blood clots and whether the anticoagulants are just for now, or forever. All the time I was in hospital there was the infection and the other things. Now it’s looking very like the other things are all part of the infection. Amazing the havoc a bacteria that coexists quite happily, often inside us, can do when it turns up a slight variation.
I’m glad to hear that you have treats lined up. The trip to Pompeii sounds especially fabulous! It should be a little quieter and cooler in the autumn so may be pleasanter to wait until then.
The iron tablets should make a big difference, and they tend to take effect within a few days. I do hope all goes well with your referral. Do please keep us all posted 🙂
I managed to miss this post- Ath. I’m so pleased you are feeling better and hope you can get the rest of the problems sorted. It sounds like a terrifying ordeal, but your story telling still managed to bring the occasional smile. Keep getting better!
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