update part 1 hospital again and again

Well not long after my August post I ended up back in hospital I felt myself going downhill fast so went docs and was admitted straight to hospital where I spent another week on fluids and antibiotics for sepsis luckily not as bad as the First time,
Turns out it wasn't the immunos helping it was the steroid injection they had given me when I was first admitted with septic shock as the reason I went down hill so fast was a rebound from the kenalog leaving my system
After the fluids and antibiotics I felt better but my skin was back to red weepy and sore
I also developed a lump at the site of the kenalog  injection I mentioned it to my dermatologist who decided to request a scan
on the 21st September while still waiting for my scan appointment my lump started getting even bigger and very tender but it was my daughters birthday so I tried to ignore it later on that night I was in so much pain I rang the out of hours doctors and they asked me to go hospital to get it checked
The doc took one look at it and sent me to the surgical ward for assessment turns out the injection site had caused a massive abscess they kept me in and said I would have surgery to drain it the next day
The doc came round the next morning and said they want to try get my infection markers down before surgery so they were going to give me a double hit of iv antibiotics and move me to my own room about an hour after my iv antibiotics had been administered I was moved into my own room and started itching like a mad woman and my skin was turning purple so I buzzed for a nurse and she came in and called the doc he said to get me iv antihistamines and a hydrocortisone injection I said no steroids I rebound badly from them so they agreed to just antihistamines no sooner had these been hooked up I started to vomit the nurse got me a pan to be sick in and left at this point I was sat at the end of the bed with a pan in one hand and the buzzer luckily in my other hand as I started struggling to breath I pressed the buzzer again n the nurse came in I managed to say can't breath before it all went crazy I couldn't talk couldn't move just slumped over I remember being quite calm and thinking this is it I'm dying and it didn't panic me at all then I was thrown back on the bed which had been lowered into the crash position had oxygen up my nose and was hooked up to a heart monitor I heard the doc say get me that hydrocortisone my heart rate wouldn't stable it was up and down like a yo yo and I started shaking uncontrollably I wasn't getting enough oxygen so they changed me over to the big face mask and really pumped it up it took them a good while and a few more injections to stabilise me but eventually everything calmed down they decided to put off my operation for another day and took some bloods instead, but not long after the doc came round and said they had changed there mind I was going down for my op that day as my infection markers were sky high and there was a real chance of the abscess causing blood poisoning if it wasn't dealt with
So off I went down to theatre to be put asleep the surgery took a good few hours but at last the lump
was gone along with the pain. I was kept in and monitored closely as I developed mrsa so was still in my own room and was given my own toilet room to use I felt like a leper haha finally 9 days later I was allowed home but had to go docs everyday for the next week to have my dressing changed on my wound as they left it open to heal from the inside out they did a good job
Oh I also decided stop the immunos as once the kenalog was out my system it turned out they weren't keeping my skin under control at all

things that have actually helped the most

Through all of this I have had three things that have had a big impact in helping me
1. Immunos - cyclosporin not a good thing to be on especially long term and the side effects (skin cancers, liver damage, kidney damage) to name a few shouldn't be taken lightly its definitely a drug to weigh up the pros n cons off before you start but if you are severe and willing try anything id recommend,  you get checked regularly while on them, blood tests etc
They took about 6ish weeks to kick in properly I started on 125mg im now on 75mg and doing so good im going to 50mg

2. 50/50 emollient, I found moisturiser left my skin alot more tearable than the 50/50 did I also melted in in my baths on the days I couldnt have a bleach bath.
This emollient is the only one I have been able to use regularly I started off applying 2/3 times a day and i slathered it on now I use it every other day and only one application and a very thin layer

3. Bleach baths- fab to stop Infection,   half a cup of normal household unscented bleach in a full bath soak for 20 mins then rinse off,  I did this 3 times a week when I was at my worst I now do it once a week purely just as a precaution to stop any type of infection.  If its your child thats suffering I would say try the bath yourself first just so you can see ot doesn't burn or sting
I think the key to this is make sure you rinse off and apply the emollient as soon as you get out this stops any drying effect the bleach can have

sepsis

Ive decided do a lil note on sepsis - the top two pictures were taken in the hospital you can see how swollen my legs had gone I was sat in the hospital garden but had to prop my legs up
www.nhs.uk/conditions/Blood-poisoning/Pages/Introduction.aspx
Copy and paste the link to read up about it, of tsw is giving you the chills id recommend you taking your temp daily as if you begin to get a fever you wont realise
The week leading up to my hospital admission I noticed I went down hill rapidly with my skin, I was in work Wednesday feelin great, by friday I was bad so went docs and was given bath stuff n moisturiser-no vitals where checked,  I was worse sunday so had to phone in sick I thought the new cream had made me worse come monday I phoned docs again she said u dont need to come in ill give you some antihistamines and a week off work, Wednesday night I went bed and slept like I havent for months a deep deep sleep but wierd dreams my partner came home n woke me my bed sheet was covered on brown/yellow ooze I felt awful ive never felt like that in my life, rang docs and was told go straight there I would be seen as soon as I arrived I went in my pjs vitals checked my blood pressure was low, my temperature was very high and my heart beat was rapid, so the hospital was called n ambulance called for that was the beginning of a 13 day hospital stay on iv fluids, iv antibiotics,  anti clotting injections and a steroid injection, I was told I was very lucky the stage I was at a day or 2 later and I could of been beyond help
Here are some pics of how my skin went during that time

For more sepsis info please copy and paste this blog info, sepsis really isnt to be messed with

http://www.survivorsofsepsis.blogspot.ca/?m=1

progress pics

The above are In order oldest first left to right 

the face pics are left to right big pics then little

the bottom pics are recent

update

Well I spent 13 days in hospital all together because of the sepsis and needed a further 6 weeks off work then went back on reduced hrs for a week and just about manages but the sepsis has really wiped me out but luckily I had holidays booked so now im off for 2 weeks x
Ive been on the cyclo for a good few weeks now and my skin is wonderful cant believe it iveeven managed to reduce my dose I'm nearly 6 months in now and wondering if maybe this is it for me maybe my tsw journey is over im going try lower the cyclo again soon and see how I go

Im going to do a post in a sec of pics taken during my tsw journey

hospital

If you read my previous post about how awful I felt it will come as no suprise that I deteriorated very quickly, I woke up Thursday morning to find the sheet I was laying on was covered in browny/yellow ooze I got in the bath straight away but felt so ill, I got out n just sat in the bathroom not really able to move, I shouted dave n said I was in a really bad way I think I may need go a+e, I rang round to try get a lift there but then I decided I would ring the docs first c if I could get a home visit, they said a doc would ring me back while waiting for the call I decided call the derms office tell them I was bad anychance I could be seen they said no, the doc rang me back just after 9 I asked for a home visit he said we only do them for house bound patients so I told him I basically was I was in no fit state leave the house, he told me he could do one but not till the afternoon or if I could get there somehow they would see me straight away.
I decided try make it over to the docs as only a 5 min walk away so I donned on my coat over my onzie n put my trainers on dave had rang cal n he came n sat with the kids
Dave helpd me get the docs and I was seen 5 mins later the doc took one look at me and took my blood pressure temperature and pulse and told me he was ringing rhe the hospital to have me admitted then ringing for an ambulance as my temperature ws high blood pressure low and heart beat very fast
I waited in the surgerys side room and first response turned up and took my vitals again n checked me over then the ambulance arrived I was taken in a wheel chair to the ambulanceI was really worried I knew I was bad but didnt think I was that bad, I was taken from the ambulance to the a+e ward and given a bed the docs came over to try take blood n get a candula iv fitted but they couldn't find a vein lots of prodding and 3 docs later they decided to scan for a vein, they managed find one in my arm but it was very thin,
Bloods were taken and an iv put up with antibiotics and fluids they then came and give me an anti clotting needle in the stomach and a steroid injection in the leg,
I was suffering from a severe infection called sepsis and had endema (full body swelling)
I was told that even though I was very poorly I was also very lucky that I got there when I dis as they caught it before it had chance to do unrepearable damage my internal organs
I was then taken up to a propper ward and 10 days later I am still here haha Im off the fluids now and dont need an iv anymore, I also developed herpeticum while in and was put on antivirals which cleared it up fast,
Ive had a skin biopsy done but no results back as of yet, im now on antibiotic tablets, and recently been started on 125mg of cyclosporin as they stopped the azathioprine when I arrived I also take hydroxine and piriton antihistamines and still having the anti clotting injection, my vitals are checked regularly and mosst of the time are normal just an occasional change in blood pressure but my hate rate is still quite high n my feet quite swollen but other than that im doing well n hope to go home soon
I was surprised to find I had lost just over a stone in weight they weighed me here n I was 7st 6 I couldn't believe I had lost that much
I would urge anyone going thru tjis to go the docs if they are feeling bad not everything is just a side effect of tsw and I dread to think if id of listened to the ppl on the forums telling me it was just part of tsw, I could of ended up dead!

immunos n moisturiser

Well im in week 11/12 and my god im in the mother of all flairs im on week 1 of taking a low dose of azathioprine as its just got too much with the kids n work, I was using oilatum plus in the bath n epaderm moisturiser these worked well for nearly two weeks but just changed to dermol bath stuff and dermol moisturiser x ive just finished my second course of antibiotics for a staph infection
Im red raw all over and weeping like crazy especially my legs im back to see the derm in two weeks to hopefully up my dose of azathioprine and maybe I will start to see the benefit
I went docs again yesterday for sleeping pills as the lack of sleep is just awful lying in bed tossing turning and itching non stop is just hell haha
The weight loss is another thing im not liking I now weigh 8 stone and still not got much of an appetite I will b mentioning this when I go back as I don't want to lose anymore x