A Major Health Setback

Warning – medical details, but some nice photos at the end!

After being discharged from hospital recently for the second time after the bleeding from my stoma, I was hoping to make a good recovery and start picking up the threads of my life again.

However, although the early days seemed to be going OK, I didn’t pick up as quickly as I’d hoped, and for several nights running, woke up soaked to the skin having had night sweats – something I’ve never suffered from before, even during the menopause. I mentioned it to the district nurse and she agreed that it could be a reaction to ongoing use of paracetamol and I tried cutting this down but it didn’t help. Later, several doctors and nurses said that paracetamol didn’t usually have this effect. (So much for Dr. Google…)

Towards the end of that week I was starting to feel worse and was off my food, until on the Sunday (15th April) I couldn’t bear the smell of it cooking. I kept feeling extremely cold and shivery and that night we took my temperature and it was around 38 degrees – I didn’t really trust our little thermometer and decided to ask the district nurse to take it again the next day when she came.

That night I started to feel quite poorly and my hubby phoned the out-of-hours doctor – why is it that I always get ill over weekends and bank holidays when nobody is around??!! – he was absolutely useless and was clearly going down through a printed checklist and wasn’t really listening to me. At the end I said, “What about my high temperature?” He said I’d probably got flu!!! I said I definitely hadn’t got flu because I’d had no throat or nose symptoms – he said you can get flu without those. I knew I hadn’t got flu! Anyway, if someone reports a temperature and has recently undergone surgery, you don’t think “flu.” He said to phone the GP surgery in the morning if I was still concerned.

In the morning I felt terrible and collapsed in the bathroom. My hubby happened to come in just at the right moment and helped me back to bed. We took my temperature again and it was still high.

Then the district nurse arrived and we asked her to check it and she was so concerned that she immediately phoned the GP surgery and a doctor came up within 20 minutes. He examined me and said he was calling an ambulance. I was apparently showing two markers for sepsis and this needed dealing with immediately. Apparently if we’d left this another 24 hours it could have been curtains for Shoshi…

Once we got to hospital we had a bit of a wait but at least I was able to be lying down. I was in a cubicle in A&E and various people came in and took details and examined me, and all the while I felt absolutely freezing cold and my hubby wrapped me up with extra blankets etc.

Eventually a bed was found for me and they said that my feeling cold was my body deceiving me – my temperature was in fact quite high – nearly 39 degrees – and if they didn’t bring it down I was likely to have a seizure. They therefore proceeded to take away all the blankets, saying that they were actually making things worse rather than better, and turned electric fans on me to cool me down! I spent the next two nights shivering uncontrollably and not sleeping at all, but my temperature did fall a bit, and over the next few days was up and down.

The first thing they did was to try and identify the source of the infection I evidently had – I had a chest X-ray and they tested my urine, both of which were OK. I had a CT scan that revealed some post-operative haematomas and this was believed to be the source.

I saw my surgeon and he said that haematomas can often cause night sweats, so that was the explanation for those. I continued to have them during those first few nights in hospital – one night having two – what a hassle having to change all the bedding etc.

I was put on my first cocktail of IV broad spectrum antibiotics and was given one unit of blood as my haemoglobin levels were falling alarmingly. They were supposed to give me two units but they said a side effect of blood transfusion can be to increase one’s temperature so they held off on the second one – this happened a few days later.

Once they had established the location of the haematomas, they inserted a drain on the left side of my abdomen, with ultrasound guidance under local anaesthetic. I was pretty nervous about this procedure but it wasn’t as bad as I thought it would be. This drain was a fairly fine tube and didn’t penetrate very deep; it was attached to a bag from which they took samples for culture, and at the top end it had a two-way tap to enable them to flush the drain daily. This drain wasn’t uncomfortable at all but limited my movement somewhat. It also had the effect of lowering my temperature quite rapidly as the infected fluid was draining away, but it was apparently not having completely the desired effect, so a couple of days later I had another CT scan that revealed more problems.

It’s hard to remember the exact sequence of events because I was feeling pretty lousy most of the time.

 

I do remember that my surgeon wasn’t on call for ward rounds for a few days and I was looked after by one of his colleagues, and he hummed and haa’ed about the infection being under the mesh, and query remove mesh? He wrote this on my notes. This gave me great cause for concern because this is a very serious matter and extremely difficult to deal with. When my own surgeon came back, he read this and said, “What’s all this about removing the mesh? We don’t need to do that!” He wrote in large letters in the margin, “Leave mesh alone!!” and signed it, putting my mind at rest straight away.

He said I needed a second drain, and as this one would be bigger and deeper, it would have to be put in under general anaesthetic. This was done, and afterwards I remained in severe pain until a couple of days after it was removed – it was very difficult to get out of bed and I managed to get onto the commode and that was it. This drain was connected to a vacuum bottle to assist the drainage of fluid, and with drains on both sides of my body, with a bag on the left side of the bed and a bottle on the right, my movement was even more restricted.

During the rest of my time in hospital, they tried me on two more cocktails of IV broad spectrum antibiotics because we were clearly dealing with what my mum would have described as “a very virile germ” haha! The final lot did seem to start working, and all through this time my temperature remained within normal limits, and my blood pressure (always on the low side) began to climb a bit so that the systolic pressure was up to three figures again – when it was down in the 80s they were quite concerned.

After a few days my surgeon decided I should have another CT scan to see how things were going, and said that the large drain on the RH side needed to be withdrawn by 2 cm in order to continue to drain more effectively. When the nurse tried to do this the pain went through the roof, before it had even moved a millimetre, and she said she wasn’t going to touch it any further without consultation.

They tried again, this time administering gas and air, but this had absolutely no effect except to make me feel slightly woozy. The pain was absolutely excruciating and I dreaded the moment when the wretched thing would have to come out altogether.

This drain was the first of the two to be removed. I told my surgeon that the gas and air had been useless and he said that because of the risks, it was not usual to remove drains under general anaesthetic, but he would give me some sort of sedative. I was given a Valium tablet which I had very little faith in, and again, all it did was make me feel slightly woozy – and less so than the gas and air. When they pulled out that drain I thought my last hour had come! It was about the worst pain I’d ever experienced.

By this time I was at a pretty low ebb, having been through so much, and all my reserves seemed to have gone, and everyone who did anything to me seemed to hurt me in one way or another! My poor hubby was so worried because I was at such a low ebb physically and emotionally, and it didn’t take much to reduce me to tears. Everyone has told me in the past how strong I am but on this occasion I definitely wasn’t, and felt completely at the end of my tether.

My surgeon said that that drain was very large and deep, and had penetrated through the same complex muscle layers to the right of the stoma (which is why the hernia operation had caused so much pain as well), and when a drain has been in for a few days, one’s body tends to develop tissue which “glues” it in place, which is why it is painful to remove. He said that after a day or two the pain should reduce, and it did. He said that the other drain was of a different sort – a much finer tube, less deep, and into simpler muscle layers. It came out a day or two later, and although it was pretty uncomfortable, it was nothing to compare with the removal of the deep one.

From the beginning I had problems with cannulae failing again. I had requested a PICC line from the outset before my hernia repair surgery but they were reluctant to do this and for once, the cannula they put in did stay the course. However, with this recent admission I was having endless problems, and having them dig around for a new site, causing me yet more pain and then for the wretched thing not to work from the outset, was becoming very wearing. They left the first one in for a couple of days longer than regulations required because it was still working and I was anxious about how a new one in a different vein would perform, but eventually they said it had to come out because of the risk of infection. Over the weekend I again requested a PICC line and they muttered on about risk of infection, and it not being necessary for short-term treatments, etc. until I was getting desperate. On the Monday my surgeon turned up again and I told him the trouble I’d been having, and immediately he said, “Let’s get the vascular access team straight down here and get a PICC line in right away, shall we?” He cuts through all the flim-flam with such authority but with such charm, and I always feel so safe in his hands! While I was in, I told him I’d already trusted him with my life three times, and he knew more about my insides than anybody but God, and I didn’t want anyone else messing about with me! He laughed! My hero.

I must share this funny photo with you. My hubby was endlessly amused by this chair – there was a stack of these chairs in the corridor for visitors. He pointed it out to quite a few other visitors and everyone had a good laugh!

Note the redundant apostrophe before the final “s” – this is something that always bugs me lol lol! We both thought that the writer’s spelling and grammar left a lot to be desired!!

After being in for 2 1/2 weeks they said I could be discharged. The infection was 90 percent plus dealt with, the drains had done their job, and the current course of antibiotics (now being taken orally) would do the rest. Because I’d had almost total bed rest during that period I was almost unable to walk, but could only shuffle very slowly with a walking frame. Because my hubby was so tired and so worried, and to give him a break, and also to allow me a transition period during which I could regain enough strength to be able to wash and dress independently and also to be more mobile, he fixed for me to spend a few days convalescing, and found me a room in the home where Mum had been.

This was rather a bizarre experience! I had had pretty negative vibes about the place because she had been so difficult, although I knew it was the best place and the care second to none. I knew a few of the staff and knew them to be efficient and caring. So off I went, last Friday, 4th May.

I didn’t sleep well throughout my time. On arrival there was a regular mattress which proved to be too hard after resting on it for half an hour, so they gave me an air mattress – I spent several hours sitting out of bed getting very tired indeed as they tried first one, and then a second, mattress – both of whose pumps were not working properly – they had been put away without being checked. In the end, I had to sleep the first night on the regular mattress, and they found a third air mattress the next day which did work, but the pump made such a loud buzzing noise that I had to continue to wear my earplugs as I’d done in hospital! Also, the room was small and the window couldn’t be opened very wide and I got very hot. I had come out of hospital in winter woollies and suddenly we were in the middle of a heat wave!

They cared for me so well. After that first night, a carer showered me and washed my hair – I was still very weak – and this gave me a tremendous boost, not having been able to do this for nearly 3 weeks!

The next day my mobility improved greatly, and I was able to walk, not shuffle, with the walking frame, up and down the corridor several times. The weather was glorious, and my hubby came over and we spent quite a bit of time over the few days I was there, sitting on the wonderful roof terrace they have, high up, overlooking the beautiful bay, and it was so hot that I began to catch the sun, and we had to go back nearer the building to sit under the umbrellas there.

The care home is part of a retirement village, which consists of the original beautiful Victorian manor house where I believe there is some accommodation, and where you can have meals; they have various functions there, and people who are not resident can join the club. My hubby belonged for a while during the time Mum was in the care home – he would often sit in the lounge with a book and a cup of coffee if his visit had been a difficult one. He got to know the staff there quite well.

Another part of the complex is a small building above the care home which is for convalescence, but since there were no available beds, I had a room in the main care home.

Below, there are some luxury apartments for people who are able to live independently. You can see the edge of this building on the left in the next photo, opposite the manor house.

Last year they had an open day and we were able to visit a couple of vacant apartments, and they were stunning – one or two-bedroom apartments with a small kitchen, bathroom and a lounge with a balcony looking straight over the sea.

Higher up, above the retirement village, is a block of luxury apartments, privately owned. In the foreground is the overflow convalescent home.

Looking back towards the care home from the roof terrace.

I think if the weather had been bad during my few days’ stay, I would have gone stir-crazy a lot sooner than I did – but sitting up in the sunshine and getting my first taste of fresh sea air and warm sun, and the sight of natural beauty after so long being confined in a place where everything you looked at was functional, was bliss. The views over the bay were stunning, and just what I needed!

On bank holiday Monday (2 days ago) my hubby took me out for a little drive and we went along the sea front, and enjoyed seeing all the holidaymakers in their summer clothes and the kids fishing in the rock pools with their little nets – some things never change – I remember loving this when I was a child! – and being so grateful for the glorious weather which would attract the holiday-makers and give a boost to the flagging economy of the town.

It was so lovely to get out and about, to be in the car, to see how much more green the trees were – just to look at something different and alive!

During my stay at the home, I got to know quite a few of the other residents (I was the youngest by far lol!!), most of whom were absolutely delightful and charming. I sat with the same people in the dining room and they were good company. The home has a weekly schedule of entertainments and activities, and on my first full day, you could go down to the manor house for a meal, and my hubby joined me for that. Half way through the meal my energy suddenly drained away and my hubby knew immediately that I had to go and rest, and said afterwards that it must have been serious if it prevented me from staying and enjoying some pudding!! He knows me too well… Yesterday was the day when residents could go out for a meal – this happens about once a fortnight. They have a mini-bus which can accommodate quite a number, including several wheelchairs, but my hubby drove me, and joined us. We had an excellent meal in a place near Dawlish, and when I came home, arrangements had been made for the continuation of my injections by the district nurse at home, and I was allowed to go.

Staying there opened my eyes to a few things. I was aware that there were social activities laid on, and how kind and efficient the staff were, but when Mum was there, she did not avail herself of any of this and preferred to spend her whole time in her room. I know that her deafness really isolated her, but having met the other residents, it saddened me that she didn’t make the effort to make any friends because they were all so lovely, and it was not surprising that she got so depressed, not taking advantage of all the lovely facilities in the home – there were several beautiful sitting rooms, one with a TV (she preferred to watch the TV in her room) and the beautiful sun lounge on the top floor giving access to the roof terrace. There were always jigsaws out, and lots of books and magazines. One of the things they provide is for someone to sit with residents in their rooms to keep them company on certain days each week, to prevent loneliness for those who perhaps are not well enough to leave their own rooms. Mum never took advantage of this, and then complained that nobody ever talked to her!

I am very glad I went, but oh so glad to get home yesterday afternoon – a few days was enough for me. My hubby had anticipated me being in for a week, but as I was so much better and he was looking so much more relaxed and less tired and strained, we decided to call it a day and get me home. Never has “Home, Sweet Home” meant more to me!

As for the kittens, when I first got home, they ran away from me, and when I attempted to get close to Ruby she was having none of it – I tried to cuddle her a couple of times but she squeaked and pulled away. Very disappointing when she had missed me so much during my absence but I thought maybe I smelt different! However, later in the evening I had two lovely long cuddles with her and she purred her little head off and got quite drowsy in my arms – this morning she’s again been a bit wary of me but things are definitely improving! My hubby says she’s a lot more settled since I got home, and isn’t looking for me and crying any more. I’ve never been away from home for so long and it must have been very worrying for her, wondering where I’d suddenly disappeared to for so long. I have missed them so much and last night I told my hubby how glad I was to be home, back with my little family! Life will soon return to normal, I am sure.

Meanwhile, he is doing the meals, which he was doing anyway in my absence, and having had that few days of convalescence, he doesn’t need to help me with any personal care. He is coming and going, and not worrying about leaving me on my own – all visitors (including the district nurse) have been told to let themselves in round the back to save me from having to get up to answer the door! Oh, it’s so good to be home!!!