EBV Virus

The Epstein-barr virus is one of the most common human viruses. Most people have been infected with the virus at some point. It can cause a sore throat, swollen glands, swollen liver and spleen. If left untreated it can go on to become glandular fever. I curretnly have the EBV virus in my body and it has increased from 13,000 to 58,000 and there is a bit of worry that my liver is swollen. I haven't had any treatment yet as i havent presented the symptoms of glandular fever however i would rather not wait for me to get it either lol. I am booked in for a ct scan on wednesday to see how my liver and the rest of the body is and depending on the results from that and my blood results a decision will be made about treatment etc. I have a normal platelet and red cell count at the moment but my neutraphils have dropped so that is a bit of a worry but i am sure it is because of the virus. My line is going to stay in a bit longer incase i need treatment for the EBV virus. I am just watching Eurovision not through choice i would like to add but because it is one of Toms fav nites of the year lol. Apart from watching trash on telly i am looking for a job at the moment. My plan is to do some volunteer work and have September as my target to either start a course or apply for a job.

A rumble in the jungle...

All has been quiet as far as my treatment goes. I have come off most of my drugs and there was talk of my Hickman line been removed. I am not in a hurry for it removing though as i have become quite fond of it lol. It will be very strange not having tubes hanging out of me like a robot anymore and getting a bath will be too easy when it has gone lol. I dont like the thought of them removing it as it must hurt as it will be embedded in to my body and they just tug at it to get it out. Anyway the peace was disturbed the other day when i recieved a call from my consultant to tell me i have a virus in my blood that causes glandular fever. I had my bloods repeated yesterday but wont have the results til monday. If the virus is still in my blood then i will have to go into hospital for iv treatment. It has to be given very slowly as a lot of people can have an allergic reaction to it. This is all great when it only takes 3 hours to get to hospital lol.

I have applied as a volunteer for the cat protection society this week as daytime tv is driving me insane so i would like to do something a bit more useful with my brain well what there is left of it lol. I am also interested in working with people with learning difficulties as i was training to be a learning disability nurse before i was diagnosed so i do have some experience. I am just watching total wipeout and i am ashamed to say i am enjoying it lol.

had some good news!

I no longer have hospital 3 times a week now that i have come off ambizone (anti-fungal drug) and ciclosporin (anti-rejection drug). This also means i will be having my line out very soon as i am only in hospital for clinic appointments now and not for iv drugs. This is a huge step forward now and feels as though i am getting nearer to all the transplant hell been over whoop whoop! Think i have caught a lergie as my throat is killing and i feel very sleepy. Spending a week down in suffolk tomorrow after i have had a makeover at the teenage ward. I still feel a bit insane but i am trying my best to fight through it and not give up on myself by just sleeping all the time etc.

feeling a bit better...

I had a good chat with michael since i last post and that really helped me to give myself a boost. I feel more at ease now i know things do get better and you do get your energy back etc. I now make muself get up every morning and have a good breakfast as this also helps my mood. I have made myself do cleaning and cooking etc and i even went to the circus this weekend. I am definately brighter in my mood and when i can i stay up late to try and help myu sleep patterns. I am in bed as i write this but that is cos i got no sleep last nite thanks to noisy neighbours and i have just had a 3 hour drive to newmarket. My neutraphils are producing on their own now which is great stuff and my leukaemia cells have gone from 256% to 0.001% so this has got to be a good thing. They will keep checking this  every month as i am still at risk from leukaemia coming back in the first 5 years but thats the same for everyone after a transplant.

Haven't felt like Lauren for some time...

I haven't posted for so long as i just havent known what to write or had the capability to think of something to write. I wish i could say it is because i have been having such a great time and been so busy. I dont feel like me anymore and it is scaring me. I don't want to do things or see people cos i feel that i dont have anything to offer people and worried i am boring etc. I cant get interested in the tv or the computer so i am sat just worrying all the time. I dont know if it is normal to feel like this but i cant stand it any longer. Why cant i enjoy the things i enjoyed before the transplant? I had to be admitted to hospital because my depression has got so bad and i dont know how it is going to improve tbh. I am on 40 mg of citalopram and diazepam for when i get really bad but i dont feel the tablets are doing anyhting. I have stopped taking sleeping tablets as i was worried they might make my mood worst. I just wondered if anyone else feels like this and if anyone has any advice? I still don't know if transplant has worked but apparently that can take 5 years but i am apparantley doing good

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Had a ok week...

Well i am c.diff and cmv free woo hoo! I still feel sickly most of the time but havent been sick for over a week now which must be a good thing hey. I am still finding eating a bit of a chore at the moment unless it is monster munch or quavers or haribo lol. I hope my dietician cant read this hah. I really really want a chinese but all the places near the hospital are only 1 star establishments so if anyone knows of a 5 star chinese takeaway in Leeds please let me know. It is a new rule that patients can only eat from 5 star take aways and dominos is the only one that the ward can use. This is better than none but there is only so many you can manage. I am nearing day 80 i believe so that will mean 20 days til day 100 when i can celebrate with bottled water and a trip to the supermarket lol. I asked Doctor Cook about why i am on penicillin (antibiotic) for rest of my life. The reason is that my spleen may have got irradiated during the transplant and so they have to treat me the same as someone without a spleen. A bit of exciting info for you there lol, i am full of facts when it comes to me and my care.


I would like to congratulate Tom and friends on Prohibit winning in Dubai it was an amazing day but wish Tom had been there. Lets hope Prohibit gets invited to world cup day so that Tom can make a trip to Dubai then as he deserves it. It was an amazing win and about time something good happened.

Had a very bad week!...

I came back into hospital with sickness and i now have a hospital bug and the cmv is back. The bug i have contracted is highly contagious and is not very pleasant. It is called clostridium difficile and you have to stay in isolation until it goes so that the whole ward doesn't get it. The cmv has come back quite high so i started treatment for that last night. I saw a pyschologist today because the doctors are worried about me as i have become very quiet and withdrawn this week and usually i crack a few jokes and i am sarcastic. I have literally done nothing since been readmitted as i have lost interest in everything so i just stare at the walls all day and look forward to sleeping as it is the only time i can escape my 4 walls. I am trying to be a bit more upbeat but it is very hard at the moment. Sorry i didnt have any happy news to post, hopefully i will soon.

Sorry i have not posted for a while...

As some of you will have seen on Look North this week i was finally let home after 9 weeks in hospital. It all happened so quickly on the tuesday evening. One minute i am hooked up to a drip stand having a magnesium transfusion the next i am preparing for Look North to arrive to film me leaving hospital. The CMV result had come back negative which meant they could finally send me home. I looked absolutely terrified but i promise i was excited too lol. When i did i get out that night i just slept as i'd had an exhausting day. My happiness of finally been let loose though was short lived. It started with me throwing up all day on Wednesday which meant i could not keep my tablets down. On Thusday i decided to ring the ward and they said i needed to come straight in. Thankfully there was a bed available(i will have been in every room on the ward by the end of it lol). The doctors are not sure why i am been sick but have put me on drugs to try and stop it. I haven't been sick since friday so i feel a bit better but i am still finding it hard taking tablets and eating cos my tummy is so sore. I didn't have a good night last night cos i spiked a temperature which means i am now on antibiotics and i am now in isolation til they get test results back to see if i have a tummy bug. It is a lot to take on when i should be at home getting back in to a routine again. Also the cmv is 1,000 so if it goes above 5,000 they will start treatment for that again. I have had a unlucky week and i am getting fed up of hospital now but the nurses keep me going with their sense of humour. I will hopefully have a happy feel good post one day lol.

Isolation...

What a week i have now gone from going home- to day release- to ISOLATION. I was only saying to Dr Cook yesterday that coping with isolation was not a prob for me cos at the time i was really ill but i said that i did not know how i would cope if i was in isolation now. I have been put in isolation to protect me whilst my neutraphils are low so i dont know how long it is for or owt cos still waiting to see the doctor. It is very hard not been able to wander in and out of my room as i please i gotta say mainly because i cant be nosey at what the nurses are up to lol. I am hoping it is just a temporay inconvineance to my weekend as i don't want my mood to worsten etc. I have got rid of facebook for the moment as i feel spending lots of time on a computer is not something i want to do anymore. I want to do more exciting things with my time now that i have a new life. I will be starting volunteer work as soon as i can mingle with people again lol. I have lost my identity the last couple of years but i will gradually get it back this year i hope! : )