Honey I'm home

Laying in my bed at home, I'm reflecting on my hospital experience. I have to say it was extremely hard mentally. I've been in and out so much that I now cannot cope in a hospital environment.

I have 3 days of antibiotics, then my Hickman line got taken out. I didn't see a consultant until briefly yesterday. He is very rude. I was going on a few hours out yesterday anyway but the day before I met him in the corridor and ask if he could see me before I left. His reply was ' I'll see the sick people first'. Charming

When I saw him yesterday he asked there was something wrong with my aseptic technique as I didn't get infections when I had the nurses.

So after a week of not knowing what is going on I felt incredibly alone. From day one I asked to see a counsellor as I wasn't coping in there but she/he never came.

I saw the dietician just before coming home yesterday and she was lovely. Said a lot of people with my condition have frequent infections for some reason. It's just one of those things.

I have made the tough decision not to have another Hickman line placed. I wanted to discuss my options with a consultant but there was no one so I was on my own with the decision. My reasons are that I can't keep living my life in limbo waiting for the next infection. I haven't been tube free in about 2 and half years so it's a new thing for my body. Mentally I can't cope at the moment with the procedure.

Coming to terms with being on tpn is hard. It's a lot different to tube feeds as it's life or death if you get a bug in your line. There is no emotional support. This is why I've said no more. I want some time to be me and get my head sorted out. I see a private counsellor soon which I'm looking forward to.

It's not going to be easy but I will have weekly blood tests to keep on top of things. The hospital said I can ring anytime. It might not work and I may have to go back on it but at least I can say I've tried.

Another tough day in hospital

I woke this morning feeling so terribly low. I think what made me anxious was not knowing what's going on. I like to know the ins and outs of everything.

Late morning my tpn nurse turns up and said there's something grown from the cultures in my line but their not sure if it's cross contamination. She also questioned my aseptic technique at home. This made me feel it was my fault I got an infection.

Eventually I saw a doctor. He confirmed I have a staph infection in my Hickman line and reassured me it's just one of those things and no ones fault. I'm now on strong antibiotics and might possibly lose my line. This is my third line in about 4 months.

I've told him I don't want another. I have to discuss my options with my consultant. I know I have gastroparesis but no one has really explained it to me. I get family members saying I should just eat more. I then question myself and think maybe if I did just eat more then my stomach will respond. Yes I've tried it and I was sick and in agony. I'm starting to think has my stomach shrunk and I just need to make it bigger. I asked the doc similar and he said it's a problem with the nerves that won't get better.

I need the consultant to sit down with me and explain things in simple terms as I feel very mixed up at the moment. I can't live my life in limbo waiting for another infection but not sure if I can survive without my line. I think if a big if I do get a new line then I will wait a couple of months as my body has been through so much that it needs a break. I need a break.

Also asked the doctor if I can see a health psychologist. I haven't yet come to terms with being on tpn. You get put on it then it's cheerio get on with it but there's no mental health support.

Sorry this is so long. Signing off for now and watching a Christmas film x 

Stuck in a world of hope and fear

I'm sitting here in my hospital bed feeling very anxious and wondering how my life has got to this. The appearance of another infection in my Hickman line was very unwelcome news.

When you go on tpn, nobody tells you how mentally hard it will be. Tpn was supposed to be a new chance at life but instead all it does is keep me alive. I don't live I exist.

Going out into the world when I've spent so much time in hospital is a scary prospect. You are thrown out to cope alone. There is no help for the mental and emotional side. The feeling of living in limbo of when the next infection will rear its ugly head. I try and plan things only to have to cancel. 

There is no moving forward. I am stuck, stuck in a world of hopes and dreams that are overshadowed by terrible fear.

All I want is to book a taxi and go far away. Of course I would take my beautiful cat Mia with me x

Christmas box and tutorial link

This week I've been back in my craft room. As I need to use up a lot of card, I decided to make a box to put my brothers present in.

I had to resize it to the gift I got but you can see the tutorial here. http://www.craftycarolinecreates.com/2016/09/large-useful-christmas-gift-box-with.html?spref=pi





Pain I've never felt before


I needed to write this post. Just to get my thoughts down as it's been playing on my mind. 

I can't remember much of my hospital stay but there is one day that I don't think i will forget for a while. It was a Saturday. I was in hospital on iv antibiotics due to an infection around my Hickman line site.
I woke up feeling ok but later on in the morning suddenly I was freezing. Freezing cold to the bones. I was in agony. The pain started in my lower back and went through my legs. I couldn't lay, I couldn't sit. I can't stand anyway. It was something I had never felt before. I cried my eyes out begging the nurses to help. 
As it was a Saturday there were no doctors around. It was hours of sheer hell before anyone could help me. My temp was 39.4, my heart rate 148 and my blood pressure plummeted.  The nurses could only do so much to help. I was hysterical and threatened to drag myself to A and E for help. I was desperate. Usually I never make a fuss and have a high pain threshold.Finally a doctor came, a junior doctor who seemed new and out of her depth. She treated me like I was overreacting and gave me simple oral painkillers. 
I was still hooked up to my tpn but it got turned off she told the nurses to turn it back on. This is a big no no. If your temp is above 38 it gets stopped as tpn feeds bacteria. I would later find out that the infection was in my line to. So every time tpn was turned on it was spreading bacteria throughout my body. She later got a telling off and was very nice after that . Surprise, Surprise.
Later another doctor comes and gives me the right painkillers.Finally it eases. I had to be monitored closely as my blood pressure was terrible and be given a lot of Iv fluid quickly to try and bring it up. I couldn't sit up without feeling sick or sooo dizzy.
It's only now that I'm home and I've started to process it. I was terrified but I'm also terrified it's going to happen again.
My body will take a while to recover. I spoke to my consultant about my exhaustion and he said oh yes because you been through a lot.
I'm frustrated that I can't do the things I want. I realise how short life is. I want to do things now in case I end up in hospital tomorrow, because you just never know.

Hayley x


I'm home from a long stay in hospital

First I apologise if this post doesn't make any sense. My brain is a bit mush at the moment.

I finally got out of hospital last Thursday after a month. I don't remember much of my stay. After going through 4 antibiotics the infection in my  Hickman line finally cleared. It had to be taken out and a new line placed. I hate having new lines as it's very traumatic.I've lost a lot of strength and am currently staying at my parents house.

While I was in hospital. The council came round to adapt my bungalow a bit more.Some doors have been widen and a wall has been shaved abut to allow me better access.This means hopefully I won't destroy my walls, doors and wheelchair anymore.

I'm ready to go back to my house now. It's going to take a while to get myself back to how I was before. At the moment I'm terrified of another infection as I've had 3 lines in 4 months and not sure I can go through it again. All I can do is try to be as sterile as possible.

Changing the subject. As some of you know I love to grow veg in my garden. I was worried about it while I was away, yes I'm weird I know. I missed my sweetcorn growing and proud to say I grew it from seed. It's nearly ready now so here is a pick for you.



Apparently the sweetcorn is the long bit under the fluffy bit. Haha. Sorry not a very good description.  When the fluffy bit gets dark then the sweetcorn is ready. Not long now. Sadly my tomatoes didn't do so well this year and I only had one red one. There's always next year.

Bye for now
Hayley x



Guess where I am

yes in hospital again. I went to a and e as my Hickman line had an infection.Got antibiotics but was feeling worse the next day.Went back and got admitted. I thought it would be a simple in and out stay. I was wrong.

Saturday I was sooo unwell with a temp of 39.4. I was in agony and begging the nurses to help me. I cried my eyes out. Eventually a doctor came and I got pain relief. I had to be checked on every half hour as I was so unstable. My tpn was stopped.

Sunday a doc decided to put saline through my line an again my temp went up. Changed antibiotics.

For the past few days I've had more antibiotics running through my line.Sadly it turns out my site and line is infected with Mrsa so it has to come out. We tried our best to save it. I haven't eaten since my tpn came off so I might be a size 0 when I come out.

On the up side I am in quarantine with my own room and tv and it's nearly Christmas.


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Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x

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