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Maz

Pete ... almost 40 years my husband ...

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I am new to this site. I found it last night after reading The Guardian article on Facebook ... this is my sad story about my husband Pete aged 65 ... a retired teacher. Sorry it's going to be l o n g ...

 

My husband was not a well man and he had a few health problems but was the best he'd been for 3 years this spring - nothing life-threatening - but basically he had a Charcot foot (associated with Diabetes) since December 2013 ... just when I had retired from full-time teaching. He was in a non-weight bearing cast for 18 months; had leg ulcers on the same leg which needed dressing initially 3 times a week so I had to push the wheelchair and drive him to various health centres. Our lives revolved round appointments. He had other problems too but recently he'd had his annual type check ups and all the tests had come back either stable or improved so things were looking up. He was more mobile wearing specially constructed boots; he had a new lightweight mobility scooter; and we thought he had recovered enough to do abit of caravanning again ... for the first time in those 3 years I thought we could look forward to some more quality years together.

 

Due to his mobility problems he slept and lived downstairs and on the night of April 22nd 2016 he was in bed in the lounge as usual - I spoke to him at around midnight when I popped down for a drink. The next morning I woke early (as I tend to do) around 4 am ... I dozed until around 7 not wanting to disturb him. When I went downstairs he was sat on the lounge floor, with his back against the sofa wearing only his underpants ... he seemed abit in shock, dazed and was cold. I couldn't get him up so one of my daughters came down and we got him on the sofa and put some clothes on him. He said he'd been to the toilet and fallen. I assumed his balance issues had caused him to topple over and I could see a large "bruised" area on the inside of his "bad" leg's thigh - I wondered how he'd got that ... anyway he seemed OK ish and lay on the sofa, had abit of breakfast, he was quiet ... but I wasn't particularly worried.

 

At around 10 am he wanted to go to the loo but he couldn't get up, he said his legs hurt too much - we tried to pull him up with a zimmer frame to support him but he couldn't ... so I decided to phone for an ambulance. When I spoke to the ambulance I said what had happened and what I assumed ... I wasn't sure an ambulance was appropriate but I was told not to worry and they would send help as soon as possible. I and they didn't see it as an emergency ... about an hour later the paramedics phoned and they spoke to Pete. With hindsight I would now say he was talking a little slowly - and he mentioned he'd felt very cold and shivery during the night (so why was he only wearing underpants?) and that he'd been on his way to the loo (not as I first though on the way back) ... now this is important because now I realise he'd done something like 2 or 3 steps and then gone down - he hadn't got to the loo and he hadn't wet himself - so he hadn't passed urine for something like 10 hours at least (and he was always getting up in the night for this reason) - but it didn't register with me until later ...

 

So 20 minutes on and the ambulance arrived. They weren't overly concerned. They chatted to us (not just about Pete but about our collection of Beswick horses which are all over). I suggested we should get a blood sugar reading and so got his kit ... Pete fumbled to get the things out ... and when he tried to prick his finger hardly any blood came out (blood pressure already low?) ... but the test result was nothing abnormal ... they put him in a wheelchair and took him to the ambulance. They left for the hospital about 20 minutes later, without speaking to me and not in a rush ...

 

When I got to the hospital Pete was already in a cubicle and hooked up to various equipment. I've been several times with my 91 yr old uncle in the last few years and I knew the BP was not looking good - far too low. The doctor had come more or less straight away and she said they were treating him for an infection with antibiotics - probably a UTI - Pete was having a bit of trouble breathing so he was given oxygen and then they moved him to resuss - I had a slight panic but I was told not to worry as it was just the better place to treat him rather than in a cubicle in A&E ...

 

Well during the afternoon things got steadily worse - his BP was incredibly low and didn't seem to be responding consistently to the drugs given. He had an extremely high temperature. He had two doctors who between them were treating him. Nothing much was said to me. Pete said very little ... other than frequent requests for a sip of water - his breathing was poor. They did ask several times about the time scale ... he was dehydrated due to being on the floor for possibly 6 hours (I had not heard anything when I was upstairs). Then they said they needed to put a central line in to get medication in him better ... I still wasn't in major panic mode. A consultant came to see him and said the "bruise" was actually cellulitis (which he'd had treated successfully twice before) and it hadn't spread and he couldn't feel anything under like abscesses (which again he'd had before). They were getting him ready for HDU (where he'd been June 15 following an operation for abscesses on that leg) ... and I just thought oh more antibiotics, going to take longer to get better ...) ... then someone from ICU came down ... and told me his was poorly with sepsis ... they were concerned his kidneys were not working properly (virtually no urine output during all these hours) but I wasn't told anymore really and didn't know what to ask. So that night he was moved to ICU - we were told he was very poorly but they were used to dealing with this and he seemed to be responding to treatment (and didn't require dialysis or the next stage help with breathing). Pete actually looked on the better side and said he was OK and we should go home ... those were his last words he ever spoke to me ...

 

The next morning a woke at 5 am and phoned ICU and was told he'd had a "settled" night and was sleeping ... I felt reassured. I phoned again at 7am and his actual nurse then said he'd not slept and they may have to take the next steps to help him ... she never said come now ... visiting wasn't until 2pm - I didn't know what to do ... then at 11 am the hospital phoned and said the consultant needed to see us asap ... we got there and she was waiting for us ... I had this horrible horrible sense of dread ... she told us they were doing everything they could - the strongest antibiotics, drugs for his low blood pressure but nothing was working and he was now unconscious ... his diabetes and other things meant his body just couldn't fight back ... she said they would continue to try but we had to be prepared for the worst outcome ... a couple of hours later the acid level in his blood (?) was no different ... and so it was that afternoon we took the decision to stop, all the tubes came out and I hugged my Pete whilst he slipped away peacefully.

 

Words to describe it all?? I can't find them ... I can see from other stories on here this is in many ways the same ... but it all happened SO QUICKLY ... around 36 hours that's all ...

So looking back the "infection"/sepsis must have been affecting him in the early hours of Saturday morning and caused him to fall over ... of course I am devastated and wish I'd known to phone for help much much earlier but I didn't know and the paramedics didn't either (I saw one of them in the corridor during the afternoon and he asked how Pete was and expressed surprise when I told them he was being treated for an infection).

 

Since then PALS arranged for a meeting with the consultant again - she was extremely kind and gentle as she had been on ICU ... she spent an hour going over it all. She said I mustn't blame myself at all - they could not believe how quick it got a hold. But of course Pete had other issues which meant he was an easier target for the sepsis. I feel robbed - it took Pete so quickly I couldn't speak with him - that Sunday I held his hand and spoke to him - I wanted just a squeeze back and it didn't happen. We should have had a few years together in retirement - not the rotten time going constantly to and from appointments ... 

 

I am going to do my best to try and make people more aware ... I just hope the medical profession do the same ...

 

Thank you for reading all this ... RIP Pete XXX

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Hello Maz,

 

it's very brave of you to share your tragic story.

 

As a survivor I know the pain and upset my wife went through during my illness although I can't imagine the pain and heartache you have endured and are enduring. Watching a loved one in pain you did everything to highlight his illness to the medics and had to watch him losing his fight.

 

Your posting will highlight the dangers of sepsis and it will educate others to understand the signs to look out for. In other words your brave post and your willingness to make people aware could help save some ones life.

 

My thoughts are with you Maz and I hope the writing of the post has helped you in some small way.

 

Thank you,

 

Mark

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Thank you for replying.

I intend to do all I can to bring more awareness ... I've started with my own Facebook page ... and have shared the article in the Guardian and the Sepsis Trust website ... my FB friends are sharing as well ... I did much the same with Diabetes and highlighted Charcot foot as many professional don't know a thing about it (as evidenced by the district nurses who changed his ulcer dressings and said what's that when they saw his foot and even when told they were clueless ...)

I am planning on attending the group drop-in on Wednesday night in Manchester ...

Reading other people's stories has made me feel a little more better (not the right word maybe ...) but knowing I'm not the only one dealing with this has helped, as has writing it all down above to share with others in similar circumstances.

I so wish I'd stayed with him that Saturday night but I only left him because the signs looked more positive and he told me to go home ... he never spoke to me again ... after that apparently his only words were monosyllabic - yes, no type of thing ...

Take care

Maz

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        Dear Maz ,

I am another Peter , originally from Anglesey now on Skye .

My sepsis happened very quickly also - my wife had taken our lad to school and then gone to work - she was going to take Daniel our son to the annual school dance in the evening and would have waited with him until it was over - they wouldn't have been home until midnight and by the time they got home I would have been dead .

At around 1pm I phoned her to say I felt unwell - she didn't get home until 5pm and immediately phoned the Doctor - he diagnosed sespsis over the phone and called for an ambulance which took me to our local hospital in Broadford .

Two Doctors and 4 Nurses , the entire Staff set about saving my life - a Doctor was flown up from Glasgow and he directed operations from the helicopter - as it was snowing in Inverness it was decided to fly me to Paisley , 5 hours plus from our house . The Nurse asked Jennie whether she had ' any last words ' but it had all happened so suddenly that she wasn't prepared for any ' goodbyes ' yet .

Jen remained by my side until she needed a fresh set of clothing and when she approached the Skye Bridge her mobile phone rang - she pulled over to take the call - there were no other cars about as it was midnight - it was her sister asking how I was - then her phone rang again , this time it was the ICU Nurse - ' I'm afraid Peter passed away , can you come back to Paisley tonight ' - she continued to console Jennie then cried out ' He's back with us !! ' - Jennie thought she was lying to her until she got back to Paisley but no , my heart had started up again , whether by defibrilator or on its own , I don't know . When Jennie returned to Paisley at 6am the news wasn't good - my heart kept stopping and the Doctors said ' There will come a time when we will not be able to restart his heart so prepare yourself for the worst ' . Jennie just stared at the Doctor without saying anything , in her mind she said if she continued to stare at him something would be done - silly I know but she was in a desperate state - the Doctor held a meeting with some others and it was decided to take me to Theatre and insert a pacemaker through an artery in my groin - ' The operation could kill him ' said the Doctor . They also said that should I live , which they thought was unlikely I would most certainly have brain damage from the lack of oxygen when my heart stopped [ I wish I'd asked them how long it stopped for ] .

I showed my first signs of life on Christmas Eve - I was on a Life Support Machine and a Dialysis Machine with a pacemaker kickstarting my heart every time it stopped - it wasn't looking good let's face it . It was decided to tell the rest of my Family that I would most probably die - our son has Aspergers and wasn't taking it well , thankfully our Daughter was training to be a Mental Health Nurse and was a great help to him - Jennie kept them together , having to arrange various places for them to stay .

 I spent nearly 3 weeks on the Life Support Machine - the Doctors had told Jennie it wouldn't be good to keep me on it for much longer and to consider switching it off - luckily I came round before that decision had to be made  . I spent a whole week in delirium - making these whispering sounds to myself while awake - Jennie wasn't totally sure sure if this was the ' brain damage ' the Doctors had spoken about but they reassured her that this was normal .

I was still swollen like a balloon however and the Doctors were mystified as to why my kidney was working properly , they had tried various drugs , none of them had worked . Jennie suggested ' colchicine ' a drug I had taken in the past for gout - the Doctors agreed to try it and within two days I was passing fluids . I was in hospital for a total of 3 months - when I came home I contracted pneumonia so back to hospital I went .

I had to learn to walk again with a zimmer frame - it took me around three months - it took me about three years to feel ' normal ' again but I'm still here . 

I realise this is no consolation to you , Maz , I just thought I would tell you my story - I had never heard of sepsis before but I now know that if you contract this disease , you have a 50/50 chance of survival - I was one of the lucky ones .

I hope you are managing ok and if there's anything I can do to help , just drop me a line , I will do my best to assist .

 Yours ,

Peter W. 

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