Jump to content
philman

Just wanted to share my story... still feel not back to normal a year later :-(

Recommended Posts

Hi I am 38 years old, and used to be fit and healthy (go joggin with the dog etc)...

 

Back in November 2013, I ended up in A&E with what turned out to be a sepsis systemic infection that has caused all manner of of issues since.

 

This began in October 2013 when I had about 2 weeks of flu like symptoms and then at the beginning of November I went home early from work feeling dizzy, sick, and very ill. That night I was shaking and vomitting and thought I could sleep it off (never been properly ill before!). I woke the next morning with a non-blanching rash all over my right foot with a line tracking up my leg and a massive swollen lymph gland in my groin.

 

I phoned NHS Direct who said I needed to go to A&E within the hour. My wife took me, and basically our A&E didn't seem concerned and it felt like we were wasting their time!! I was struggling to talk!! The lady doctor thought my swollen lymph gland in my thigh was maybe a blood clot, so did blood test. She got a more senior doc to look at my foot who told her to swab my rash - but the lady doc never did. She gave me some oral flucloxiccilin and sent me to the discharge area whilst they wating for the blood results. Then once the blood results came she discharged me with a weeks worth of oral antibiotics and that was it even though I had uncontrollable shaking (rigors), fever, vomiting, a red line tracking up my leg from my foot (where the infection started), and a very swollen lymph gland in my groin.

The weeks following were the worst of my life, I could barely walk for about 4 to 5 weeks (my legs didn't feel like they were part of me and were like lead weights) and my gp gave me more antibiotics. The infection caused issues with my pancreas (amalyse levels all over the place and painful) and appendix, I had lymphangitis which was extremely painful in every lymph gland in my body, times where I struggled to talk and felt like I was going to die. I strugged to sleep for weeks as my leg muscles were rippling on their own at night time and I had to take co-codomol to sleep. I also had some panic attacks during this time in the night with palpitations. Oh and my chest hair turned grey - bizarre!!

During this time my GP wasn't 100% sure what was going on with me, so I had all manner of tests - for auto-immune diseases, leukemia, blood disorders etc... rather stressful!! At the beginning of January 2014 my did share with me one night that she was scared I wasn't going to get better and thought I was dieing.

Anyhow, it has been over a year now since all of this happened and the medical friends I know have always said that they are really shocked that A&E didn't admit me with iv antibiotics. They have also said that I would have a medical negligence case as I would have got over this far quicker had I been admitted and put on an iv antibiotic drip etc.

I am not one to really do a negligence case - especially as it is friends who have said this to me. However, recently I had to see occupational health at for work as we use pool cars, and I had to tell the Occupational Health Manager about what had happened. He could not believe that they didn't admit me and said that I am lucky to be alive today!! He said that it is only because I was young and fit that I survived and that he isn't surprised that over a year later I am still not all that well.

He said I need to do a negligence case as the hospital need to learn from this as he was so shocked. He also offered to give his professional opinion where needed in my case.

So, over a year on, I am still fatigued and have many aches and pains that come and go, recently had cramps in my legs and a bit of dizziness, indented veins on my foot when I haven't walked for a bit, my hands go like I have been in the bath for hours (prune like) when I haven't... I could go on...

 

Obviously I am very glad to be alive and still have my extremities and know that many people were not as lucky as me... but I long for the day when I have energy and feel like 'me' again. I have two boys 4yrs and 7yrs and our last :-D baby is due in May!

 

There, that's my story... I hope I can update this sometime in the future saying I feel great! One day - hopefully!!

 

Phil.
 

Share this post


Link to post
Share on other sites

Hi, Phil,

 

Thanks for sharing your experience and I hope things improve for you soon and that you are able to fully enjoy family life with your young boys and new arrival later in the spring.

 

Sepsis takes some time to "get over", as I know from experience, and it can be very frustrating and worrying when you feel you aren't getting better fast enough.

 

I've no magic bullets to help with that but you might want to consider the following:

 

Speaking to your GP about how you are and asking for his/her support and advice?

 

A booklet from the UKST "Sepsis: A guide for patients and relatives" tel: 0845 606 6255 - I found this helpful especially the "after sepsis" section.

 

Attending a support group - not sure whereabouts in the Country you live, Phil, but there is a Sepsis Support Group in the West Midlands and also one in Manchester which meets for the first time next month.

 

It is important to allow yourself time to fully recover (hard to hear, I know!) and treat yourself as you would a good friend who had been through a similar experience.

 

My sepsis experience can be found on the UKST website - personal stories - Julie Carman and may be of interest.

 

I can say that I do now feel "like me again" but it has taken a while (much longer than I wanted!!) and like you I feel lucky to be alive and that my leg was saved.

 

I hope that in time you will be back on top form too, do use the Forum and the expertise of the team at the UKST for support and as a sounding board. Most survivors (and their relatives) find it can really help to talk to someone who knows about the problems and questions they have.

 

Take care,

 

Kindest regards,

 

Julie

Share this post


Link to post
Share on other sites

Thanks so much for responding Julie. Yes I had seen about the support group meetings. I live in Stoke on Trent so I could possibly make my way to one of these either the W. Midlands one or the Manchester one. This past week has been one of the 'low' feeling rough weeks... Still plodding on with life and work, but just not feeling 'right' - I am sure you understand what I mean.

 

Trying to get an appointment at our GP's is extremely hard... but I may try again, just to talk through things as I know it is easy to sometimes worry that any little niggle or pain is the sepsis coming back again. Anxiety over worrying about it coming back again has suprised me as before this I was a very mentally strong, laid back, no fear type of guy. This is frustrating!!

 

Yes, from reading on here and other sites over the year has made me realise that getting back to 'normal' is a slow process and that looking after yourself is very important. I am a little worried about the coming lack of sleep with the baby on the way and how that may make me feel. Hopefully all will be ok energy wise etc!

 

Anyway, thanks again Julie, it's nice to talk and 'off-load'!

 

Phil.

Share this post


Link to post
Share on other sites

Hi Phil,

I'm not at all surprised you feel anxious about your sepsis recurring and because it's taking so long for everything to settle down. You've gone through both a life threatening and a life changing experience. I doubt there is anyone out there who wouldn't be frightened by such an experience. Traumatic would be a mild way of describing what you've been through. As Julie says it does take a long time to recover from severe sepsis. We would expect it to be 18 months - 2 years before you start to feel anything like your 'near normal' self. But you will get there.

 

Try and rest when you can, even if that means having a nap in the day, just to boost your energy levels. Especially when your new baby arrives (not for too long as to disrupt your sleep pattern though).Is there anyone in the family who could help out initially with the children? Don't be afraid to ask people for help. I'm sure they'd love an excuse to look after the children for short periods to give you both a break. 

 

And remember, even if you can't make one of the support groups, we're here if you want to chat or if you feel really low. Just call the girls in the office and they'll put you in touch, Libby.

Share this post


Link to post
Share on other sites

Hi Libby,

 

Thanks so much for your comments. It is good to know I am not going crazy and also good to know that 'still feeling naff' is normal for what i've been through.

 

The night before last, I had a panic attack before bed... I haven't had one of these for about a year - very frustrating. I think because i've had a rough week with pains etc, my mind was playing tricks on me and I was worrying that the sepsis was coming back. My legs and arms felt really heavy and my head felt like blood was rushing around it (after reading online these are all classic signs of panic attack apparently). Then those panic feelings make you think that it is sepsis starting again - a vicious circle!! My wife calmed me down and I took some paracetimol to help me sleep. My legs were then restless too.

 

Thanks for the advice about when baby arrives too... I think I have probably been doing too much over the past few months thinking I could go back to my normal pace of life. I realise now that I need to look after myself!

 

Looking at the support group dates I don't think I will be able to make one for a good while, but hopefully I will make it to one at some point in the future.

 

Thanks for your support...

 

Phil.

Share this post


Link to post
Share on other sites

Hi Phil

Thank you for sharing your story.

I am now 16 months post sepsis and I am no where near the 'girl' well woman I used to be.

I suffered from sepsis following routine surgery. I was in hospital for 2 weeks and am very lucky to still be here. I feel very lucky that I was in hospital when I contracted sepsis and indeed you are very lucky to have come through what sounds like a really difficult time for you. In terms of bringing a negligence case I guess you will need to think that through. There are many other ways of working with the NHS to improve systems but the reality is that sepsis is not recognised well and quick enough.

I suffer from a 'rubbish' immune system. I have PTSD following my experiences in hospital and flashbacks regularly. Since sepsis I have trouble with my eyesight and hearing on one side.

I found the information from Libby on Post Sepsis Syndrome reassuring.

I have come to the conclusion I will never return completely to the person I was before sepsis but you will start to feel a bit more like you every day.

Good luck

Lisa

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...