Infection & Infusion

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I will honestly say that it’s now October,  i’m on my 3rd month of treatment and I still don’t fully understand how everything works.

2 days before treatment day and I wake up through the night with symptoms of a water infection. Now I know one of the side effects of my treatment is water infections, I had mentioned I’d suffered with these for years when I was speaking to my MS nurse and the Dr has never really done much about them. I am in the process of being referred to urology by my nurse to see if we can work out why I get them anyway I was worried I wouldn’t be able to have my treatment with an infection so I rang my nurse and asked if I can drop a sample in to be checked.

Treatment day, the symptoms have died down and I’ve not heard anything back about my sample. So I’m all hooked up ready to go. Going through the check list with the nurse and I mention my possible infection,  things are checked and I DO have a water infection? another sample given and calls to the MS nurse, then it’s decided I can still have my treatment I just need some antibiotics. Not sure if I should be concerned,  but I was just glad I could still have my treatment

How bad is infection with tysabri?  what will it do? anything?  mot much? how concerned should I be about infections? I told you I still don’t quite understand!

I did have a great time on the ward tho, there was some right characters in with me and it was a great laugh! It’s always a good atmosphere and I feel really comfortable there, the nurses are starting to remember me and it’s not daunting at all, my chair even reclined this time so I had little to complain about. I’m nearly finished my book too so going to have to start looking for another good one to read soon.

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I am determined to not be ill this winter, I have been taking my vitamins and had my flu jab, but with two small children who will pick up everything going I need to keep myself going. I just don’t have the time to be ill. I also don’t want to take time off work, I don’t want to have to explain myself and im worried it will make me look ‘sick’ and I’ll become unreliable or people with think I’m playing on it, it’s easier for people to say how well your coping.

The weather has really changed today and it really feels like autumn now. The kids have there dressing gown and slippers on and the cosy bedding has came out too. Not bad for making it to October.  I’m just hoping for a mild winter with as few bugs as possible for us all. There is nothing worse than having a poorly household.  It just bounces from one to the other and it’s exhausting!  I remember the vomiting bug from last year that had my washer running constantly with nowhere to dry everything.

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I do actually really like autumn & winter, I prefer cosy dark nights to long sunny days. It’s homely 🙂 Soup, pjs, cosy blankets & mugs of tea – bliss.

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2nd treatment & 2nd wedding anniversary

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I’ll be honest it’s not as nice as last month. The needle and infusion are totally fine but my chair is broken and uncomfortable,  it is stuck upright and doesn’t recline (1st world problems) and im sat in a draft too! I’m sure I’ll get over it though 🙂

Ok whine over then – the staff are lovely, it’s a great atmosphere and nothing is too much trouble. I’m on my second cup of tea and lunch will be hear shortly. I can’t really complain!

I was prepared this time with my book, snacks and drinks all ready to keep me going. I even had time to go shopping for new work shoes before my appointment without children, This is classed as a luxury indeed.  This has turned into a lovely me day when I have my treatment, turn a negative into a positive I say 🙂

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Really looking forward to tonight too as me and my husband are going to see Ant & Dec on the takeaway tour in Newcastle, it’s our second wedding anniversary next week so having a night out together tonight – can’t wait 🙂 It’s lovely to get some time just the two of us and go out together. My mam is going to babysit for us so kids will be all sorted.

Ok i’m going to read my book and wait for lunch, all good! Apart from a numb bum

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JCV Negative, that’s positive!

Today I had another visit with Barbara to check in and get my bloods done again.

My liver function test (LFT) was quite high when I had my 1st lot of bloods done, and this was before my treatment had started. So we are keeping an eye on this, my neurologist and MS nurse had consulted with a specialist about my liver before they started me on Tysabri. I don’t really drink alcohol and don’t take a lot of medication or any drugs, so it is unusual for it to be high.

They decided the need for me to start treatment for my MS was greater but we still keep a check on it and I’ll have appointment for a liver scan soon.

My results from my last lot of blood tests had came back and I was showing as JCV negative, which is quite a relief as this greatly decreases the chances of me getting progressive multifocal leukoencephalopathy (PML)

John Cunningham virus (JCV) is a common virus that’s completely unrelated to MS, about half the UK population are infected with JCV and most people are infected in childhood. 

JCV is important when taking Tysabri as the virus can become active again in people who have a weakened immune system and can end up causing an unusual brain infection (PML) which can lead to severe disability or death.

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Although I have been tested and my results have came back negative, I will be tested again to re check incase anything changes in the future, but for now it’s good to know 🙂

While talking she seemed very interested when I mentioned I have always had reoccurring water infections,  I’ve never been given a reason or had any investigation done as to why this happens. She mentioned seeing urology to get it checked anyway. I feel really looked after by Barbara,  she is really straight to the point and will be very thorough when it comes to your concerns.

I also spoke to her about the pain I was getting in my arm, she is going to speak with me when I have my treatment and maybe change my painkillers, I had told her I didn’t want anything that will knock me out or make me feel out of it, but also the stuff I have only takes the edge off slightly. 

She also mentioned taking a vitamin (D3 & calcium) which I say I’m going to do and never get round to buying them for the family. She then told me about a information group she was holding soon that I’d be invited to attend with my husband.

A busy morning followed by lazing on the sofa all afternoon having a phone day with my daughter while the littlist is with my mam for a few hours.

Crazy stuff is happening!

When I was having my infusion today towards the end of the hour some slight (so very small) feeling returned to my fingers, I didn’t think much of it as it was so small, but tonight I have so much more feeling in my fingers and hand in general!  This is the most feeling I’ve had since the symptoms started in 2013! I don’t know if it will last or if it’s the the ‘hit’ off the treatment people experience and it may dissappear but what ever it is it was more than I’d even thought was possible!

Watch this space!!

Tysabri & fire alarms

Today was my 1st treatment of tysabri,  it’s been a long weird day really but not as bad as I was expecting.

I was really nervous this morning, i’m not sure why? I wasn’t worried about the treatment, i just felt a bit nervous, like how you get before a job interview or something. I was half wanting to get it over and done with and half wanting to stay home. I think It was more fear of the unknown than anything else – a bit silly really!

When I got to the hospital I was early and had my book ready? I knew I would be here a while and wanted something to do to take my mind off things. I was walking through the car park and a fire engine came blaring past and pulled up outside one of the other units! I was half way along the corridor when I had to stop due to the fire alarm going off inside the wing i was going to! Typical! – this was not a good sign :/ but It was a false alarm in the end and after a long wait I got inside to check in.

I was sat in the ward waiting for a chair to free up and it was quite a relaxed place. People were reading, playing on phones & tablets or just sitting chatting with each other. Later when it quietened down people even went to sleep! The nurses were lovely too, you could tell they knew the patients and were asking about people’s family’s and jobs, everyone seemed really relaxed and comfortable in the ward.

My appointment was at 11 but it must have been a busy day and I suppose the fire alarms didn’t help either. I didn’t end up getting seen till half 12, it was 1pm by the time the drip was connected. I was starving and tired and already wanted to go home.

The needle bit was fine, they put the cannula in and a flush through first and then after that they hooked me up to the bag with the tysabi in it was set for an hour for the drip to go through, then i had to stay for an hour afterwards to make sure I had no reactions to the treatment. 

The fire alarm went off again while i was in the ward but we didn’t need to evacuate or anything exciting like that, it just woke the sleeping man beside me up and made the 2 women across from me complain about the noise! One of the men said every time the fire alarm goes off as a false alarm the hospital get fined £500! Not sure how true that is but if it is they lost a grand today while I was there!

I was then saved by a man bringing round lunch, yeah, who knew there was food, I’ve never been so grateful in my life. After a beef dip sandwich (I almost inhaled this I was that hungry) and a cup of tea I felt better and was having a great time. I got started on my book, with my feet up, comfortable and relaxed with my drip doing its thing beside me.

I never usually get a chance to read at home with having 2 kids under 5 there is just not the time, and to eat without sharing AND have a hot cup of tea is almost unheard of, it was bliss 🙂

Most people had now left and it was quieter with only a few of us left, it was really relaxing and I can honestly understand how people can sleep during this. More tea was provided along with biscuits and I was having a lovely time reading.

I found the treatment easy and nothing bad at all, I suppose I’m lucky as a lot of the people in the ward had mobility issues and other problems (i’m not sure everyone was there for the same thing as me) I have not seen any side effects either so far so I’m hoping it’s this easy every time. I’m already looking forward to my little bit of peace and quiet next month.

Feeling very blessed today 🙂

Bloods, bloods & more bloods

So on Monday after my diagnosis things just kind of sped up. The MRI showed a lot of activity since the previous scan and treatment was to be started as soon as possible to try and stop any further damage being done.

My MS nurse is great, I love the way she is completely straight with me, very ‘this is what it is and this is how we can deal with it’  her honesty doesn’t scare me about what I have – it’s practical, I prefer that.

We have decided to treat using Tysabri – This is given by a drip once every 4 weeks, it’s going to help stop the movement of the white blood cells across the blood – brain barrier into the central nervous system which should help prevent nerve tissue damage. The benefits can be reduced progression of the disabling effects of ms by over 60% and decrease the number of ms attacks by over 80%. This was more than I was expecting from any treatment and the % is much more than I could have hoped for.

Crazily i’m booked in to start treatment on Friday!  Diagnosed Monday and treated by Friday,  this is moving fast, but the longer we wait the more damage is being done and a relapse could cause huge irreversible damage, so as I was told by the ms nurse when I questioned how quick it was starting ‘why would we wait?, your young and active, let’s keep it that way!’

I went up to visit the ward where I’d have the treatment, it was nice and not what I was expecting at all. It was all big comfy chairs, TV to watch, people reading books or magazines and just chatting with each other.  I suppose I thought it would be people lying in a bed looking ill, i’m actually looking forward to a couple of hours each month to sit and relax just me 🙂 no kids or house work to do – i may even get to read a book!

I was all set for Friday but my MS nurse rang yesterday to say my blood test showed my liver function test was quite high, I had to go back and have my bloods repeated this morning but thankfully my treatment can still go ahead as when it was discussed they had decided my need for the treatment was greater. I just need my bloods done again in 2 weeks and ill get an ultrasound on my liver soon too.

I wish they would stop testing me for things as they seem to find more and more things wrong with me – that and the fact my arms look like a junkies now 😦

All about me :)

Ok this is the start of my journey! so as they say, let’s start from the very beginning…..

I’m 28 and was diagnosed with MS on Monday 4th August 2014. I was expecting the news as it had been mentioned at earlier appointments. I was strangly quite relieved to have it finally set in stone, it had finally ended the ‘what if’ stage and started the ‘where do I go from here now’ stage, which I think is a better place to be.

It first started in 2013, It was during my second pregnancy, i was nearly 5 months pregnant and I started getting pins and needles in my fingers on my right hand, it then spend to my hand and up my right arm. Then I started dropping things, cups and plates would just literally tip out of my hand! My coordination went next, I’d go to put the phone down at work and I’d miss? I’d place something down and it would slam really hard. I’d never had anything like this happen before, I thought it was just a trapped nerve or something like that.

I wasn’t really worried until I lost the use of my whole right arm. It was just floppy and had no sensation, I couldn’t grip anything or even move it. If I was touching something I couldn’t feel the material, couldn’t tell if it was warm or cold, I couldn’t tell if slamming my hand down hurt! Nothing was causing me pain and I remember at the time being more worried as we were going on a family holiday in a few weeks and I was supposed to be the driver.

In April 2013 I rang my GP who told me to come straight down, I was then to see a neurologist the same day as an emergency, I think this urgency was due to the pregnancy more than a concern for me as I was fine otherwise. There was lots of tests done at the hospital but all showed I was ok, but as I was pregnant I couldn’t have an MRI scan, I was assured that nothing was harming me or the baby and was possibly a trapped nerve somewhere in my neck.

We went on holiday, my arm was still useless and I couldn’t drive so we ended up taking 3 trains and 2 taxis! my poor husband had to carry the bags, then later my 3year old daughter when she got tired. This was not the best idea we had, but we still managed to have a lovely holiday.

Fast forward about 5 weeks and the feeling came back to all except my fingertips, I was at work, doing school runs and I was just grateful that my arm worked again. I wasn’t bothered really about my finger tips, as i assumed the feeling would come back eventually . Life was busy.

I then had my little boy who was absolutely perfect! He was poorly when he was born and spent some time in neonatal. It was a emotional and crazy time for us, but he came home after onlyba short stay. I felt so happy, I had my little family complete. I’d stop noticing that the feeling had not returned to my fingers, I used to joke about how I can now pick hot stuff straight from the oven! Life was moving and we were enjoying being a family of four now, we were to go on our next family holiday with both kids in April 2014.

The pins and needles started getting worse in my hand and arm, Id ignored it as I was too busy, I also started getting excruciating pain in my wrist and shoulder, almost like I’d been slammed into a wall, or thrown from a car. Again I wrote it off, I must have slept funny or pulled something, maybe it’s from carrying the baby around in the car seat. I always had a reason.

Then I dropped a cup of tea – just like last time my hand juat tipped on its own. It was back.

This time the Dr didn’t seem overly concerned and I had to practically beg for the MRI that couldn’t be done when I was pregnant. Surely they would find the nerve, untrap it in some way and all will be sorted.

I was booked for an MRI scan on my neck, I went to the local hospital and lay in the tube. No one can just relax with that noise surely? The day after the scan the hospital rang me and said I needed to come back down for a scan on my head the next day. I guess you know it’s something when things move fast. The next day the Dr rang to say he was going to send me to see a neurologist – MS was mentioned for the first time.

I was quite shocked but almost glad they had found something in a way. I was however really confused as it didn’t really fit. The idea I had of people with MS is they use a stick or wheelchair and are tired all the time? I suppose I was waiting to be told it was something else, maybe something similar but not MS. It did start to sink in a bit more as you have time to digest the information while you wait for your next appointment. So I was prepared when I seen the neurologist again, she wasn’t looking for anything else it seemed this was MS, we just needed to prove it. I’d had 2 attacks but at they were both on my right hand she couldn’t diagnose as there needs to be 2 separate attacks. Still not a definite yes or no, this drove me crazy! Another MRI scan was booked this time using the dye to see the damage and lesions. So off I went for more scans, this time they scanned me as normal, then while I was still lying down in exactly the same position they injected some dye in to my arm.

This brings me back to now…. on Friday I was contacted by Barbara who is my MS nurse,  i was told when i seen the neorolgist I may need to see her. I’d still not hear back about my scans yet? So is this a yes or no? she confirmed the scans were what we thought and said I should have had a letter from the neurologist confirming my diagnosis, ERM no? OK she wanted to see me Monday to discuss treatment.

So here I am…. I thought this would be a good way to document my journey,  I honestly don’t know enough about everything at the moment and im not 100% sure how I feel about it all, but it’s happening so I’m just going with it for now!