Hospital Food

As we all sit down this afternoon to let our Sunday roasts settle spare a thought for all those patients in hospital who will most likely not had a good a feed as you.
There has been a lot of media coverage on hospital dinners with everyone from celebrity chefs to mp’s talking about them! So here are my views on them, which are first hand after spending nearly 9 months of the last 12 in hospital at St James in Leeds and on various restricted diets.

Breakfast:
Everyday there was a good selection of cereals accompanied by toast and jam, no hot option except porridge made with water :-/ My criticism of this meal time was that the toast was all pre toasted so unless you were first to be served then it was very much like rubber.

Lunch:
Lunch and dinner were always selected the day before by a menu system and during the week there was always a good selection of soup/sandwich/jacket potato or a hot option with accompanying sides and a nice selection of desserts including Yorkshire ice cream, 3 guesses what I had!. On my longest stay while on a very restricted diet I pretty much lived off jacket potato with cheese n beans as my diet was gradually lifted I had the soups and hot options. Tuesday was always my favourite as it was the day of the Indian selection which in my opinion is the best lunch of the week. On a weekend however the options dipped and selections became more difficult for those on restricted diets. The Sunday dinners were nice enough, a choice of roast meat like beef or lamb with two vegetables. The only problem I had with lunches was it was that often the portions were simply not large enough and there was no way to request large, this for me was a particular issue as I needed to put on weight! Imagine your Sunday dinner being a portion of green beans, 4 roast potatoes and 2 slices of meat not much is it, also on occasion the jacket filling would be no bigger than the size of a dessert spoon! So with no food coming til dinner you were reliant on family and friends bringing in snacks.

Dinner:
Like lunch this was pre ordered the day before, not as much selection as lunch you either had hot dinner with 2 sides plus pudding or you had a sandwich with pudding. The mains were normally pretty good including some classic dishes like corned beef hash and fish n chips. Every other week the Saturday evening meal rotated between Indian theme and Chinese theme and he dishes on offer were very good, again portion sizes were an issue just like lunch.

The other issues I encountered with the food in hospital were….
Wrong food being sent when I’d ordered something different, this didn’t happen often but enough to frustrate me.
No food being sent when ordered, this is when you plate arrives and you’ve asked for potato salad and there is none, you question it and get a short response of they didn’t send any!
Having a treatment and your lunch not being left for you, now I can appreciate this for warm meals but not for sandwiches, on a few occasions I was without food because of this.
Protected meal times didn’t work, see above plus nurses and Drs would come and see you whilst you were eating, I did lose it with one nurse over this as I was trying to eat my lunch while they were trying to connect my treatment.

On a whole I don’t think the meal options and service is that bad where I was but there are certainly improvements that can be made and there are some of the catering staff who do seem to try harder to provide a good service more than others.

Those are my views, I am not a celebrity chef or mp but I have first hand experience!

Junior Doctors

Junior Doctors

Actually I am back in Hospital

Yes I am back in hospital, I had a bad case of the flu and needed anti-biotics etc. Unfortunately I did end up in hospital in quite a spectacular fashion. I passed out at home and fell onto my little boys railway track cutting my head open. So I arrived in hospital via an ambulance. Anyway I am better now, well as better as better gets.

This stay in hospital has been a lot different to others in that I am on a much more open ward so I’ve had more freedom and my visitors have been the little people in my life which I believe made a big difference. They haven’t come every day but they’ve been few times. I wonder if they’ll want to be a Dr now when they’re older. Maybe I’ve inspired them.

I’ve also been able to work from my hospital room bringing a new meaning to work from anywhere, to enable this I’ve had visitors from work, which again was great as it was a break from the normal visitors and an opportunity to talk work gossip and geeky stuff. It’s a good feeling being back working.

The above two things combined appeared to change my mindset and I have a much more positive outlook on things, rather than sitting\laying in bed with the attitude of I am ill whats going to happen next I am finding myself getting up and doing things. I have been out of the ward visiting the hospital café and walking round the ward building strength back up in my legs. 

I am now over the flu and feeling fine, I have had every type of scan except an MRI which is scheduled for tomorrow and then I am going home…

My Blog My Way

I’ve not updated my blog for sometime and a lot has happened, too much to really to do a bringing you up to speed post so I will not bother. Needless to say it has had its ups n downs.

I’ve made the decision that rather than just post this is what’s happened to me on my blog I’ll use it to post the positives that I’ve experienced too because lets be honest they are a much more enjoyable read than the I am back in hospital with an infection posts!.

So if you only read my blog to read about my suffering then you may want to unsubscribe now! J New things coming to my blog, more pictures, some of my musings and rambles, kids stories and some recipes.

If you’re a regular visitor you’ll of noticed one change already.

Returning to Work

I have mentioned in earlier posts that I have finally returned to work, I use this term loosely at the moment as I am taking it very steady on guidance from my Dr, my boss and my HR lady, all of whom have been fab whilst I have been off.
My return was to made up of catching up on emails, news and doing tasks which don’t involve any decision making so I didn’t get to stressed or anxious.
I’ve only been back for 3 days and all I am doing is catching up on emails, I have a lot, company news and changes and the changes within the team I work. There have been a few and they all look like they are for the better.
My first day back (I am only doing an hour a day to start, and working from home) was met with nervous excitement. I could either sit in the background and read emails or I could log into the system proper so my colleagues would know I was online and they could send me emails etc. they couldn’t call to talk to me as my Blackberry was being fixed. I opted to ‘announce’ my return via email which I must of written 3 or 4 times.
I then set about reading the emails in my inbox, I didn’t read any as once they’d all downloaded it was clear that I needed to filter out all the sales/junk emails. This took sometime but did clear the wood from the trees as it were.
After an hour I was tired, who’d of thought working (reading emails) was hard work, I guess it’s re-activating the grey matter that took all the energy out of me, after all it had been more than 7 months since I’d actually engaged my brain so it was one hell of a jump start! I put my out of office on, amended from extended absence to back on Monday, logged off and rested.
My second day at work consisted of email filtering, I must of unsubscribed from 15-20 mailing lists, seemed a good idea when I signed up to them! Reading the emails I’d flagged as needed to read first. I also completed an update to a spreadsheet which I’d been asked to do. It didn’t take me as long as I’d thought it would. I’ve still got the skills
I am now onto my 3rd day and it is more excitement than nerves now, however I’ve yet to return to the office and have proper interaction with my colleagues which is probably the part that I am most anxious about. I have discussed this with my boss and HR and we are thinking of ways to be break me back in gently…
Needless to say returning to work is great for the confidence but when you have been absent for any length of time it’s tough to begin with and I can only say if your honest with people about what your limitations are then it’s easier for everyone to construct a return to work plan that everyone feels comfortable with.

The busiest of weeks

The week just gone has been the busiest I’ve had for a long time, there was something happening everyday. It’s now Sunday and we are still busy but it’s more of a relaxed busy if you know what I mean!
Monday began with my regular trip to Rotherham to have my ECP, I was nervous again for no good reason other than I think I was worried about the whole week and how busy it was. As I have come to expect it was a lovely visit and I was well looked after by the staff, I even tweeted as much. They take an interest in each patient and what they’ve been doing or what they’ve done since last visit. I met some more ECP patients, the staff there have managed to create a very social environment.
On Tuesday when we arrived the nurses were discussing the tweet of the day, apparently someone had tweeted about how nice the nurses were on the ward. They didn’t know who it was who had tweeted it, so I confessed! It was great to see that something I had tweeted about a specific person/department had made its way back to them. Had a chat to the other patients and met a third who is a regular at Leeds like me. It was really nice to chat to her about Leeds and her own experiences. The weekend before she’d been away and had cooked dinner for 12 walkers, just shows what you can do with a terrible illness.
So with treatment done, I put my sunglasses on and covered myself in factor 50+ and we went home, all before lunch!
Tuesday afternoon was spent resting as best I could as I was very nervous about my clinic visit to Leeds, it had been exactly 2 weeks since I’d been home and the last 2 times I’d been home for 2 weeks I’d ended up back being admitted! This and the rest of the week was playing on my mind too.
Wednesday morning I was very nervous but I did my best to get up and get some stuff done, including booking my car in for a repair, which you would think would be an easy… However after explaining to the nice lady that my car indicates right all the time and it was not safe to drive, I was informed that I needed the RAC to confirm it was not safe so they would be round within 2 hours. I said ok and waited! My phone rang after about 15 mins and it was the RAC. I explained the problem and the technician was very helpful, he explained that there was a known fault. He also asked where I was. I explained I was at home and he said I would be ok to drive to my local Ford dealer, 2 mins away. I asked him to report this back as they wouldn’t listen to me, he said it would update but I needed to call them. So I called the lease agency again, explained what had happened and like magic my car was booked in for 8am the next day. This in itself I hadn’t thought through, Natalie and Lauren were going on the school trip in the morning so I had Ethan to look after until I took him to the child minders! Whoops. All sorted I would go slightly later and my mum would meet us at the garage and drive us home! Sorted.
My clinic appointment was praying on my mind, there was a fair bit needing to be discussed and also I had a late appointment meaning a rush to get to the pharmacy after clinic. My mum was coming with me as I have struggled with my last few, Natalie came to the last one and its good to have company.
After lunch my mum and I set off in plenty of time, it helps to get there early so they can take bloods and get results back before your allotted clinic time. My normal bloods were ok and my livers seemed ok, one had risen due to different drugs. I went through other things with the Dr and one of my drugs was reduced, it felt like a pretty good visit. I was due back on Friday for my AV medicine and the Dr was going to come and find me to discuss the bits we couldn’t sort today.
We were very quick for clinic and I made it home for tea with the kids which was nice.
Thursday was a milestone day for me, I was returning to work, I had come close to this before but I was taken ill with GVHD so was unable to begin, now I was in a position to start the long path back to full time work. First up though was taking the car to the garage and before that getting Natalie and Lauren packed off for their school trip to Harlow Carr Gardens. Once they were on their way myself and Ethan got ourselves sorted and I took Lauren’s car seat and the pushchair out of the car and fastened Ethan’s in. We drove the short distance to the garage, where we met my mum and put Ethan’s car seat into her car and then we all went in. This was Ethan’s first visit to a garage and he was very excited to see all the different cars. I sorted out the repair with the service chap, he was excellent and I said there was no rush for the car today so if they needed to keep it that was ok. We then had a sneaky look at the cars, I have to say I particularly like the new ford grand c-max. Plenty of kid space and lots of toys up front too
My mum drove us home and Ethan and I set about playing with his farm, rather than having your standard farm animals though we had a farm of dinosaurs! Eat your heart out John Hammond (Jurassic park reference)
At about 11 I fired up the old work laptop, and began the ritual that logging in from home. I had very mixed emotions whilst I did this and will blog returning to work in more detail. I did just over an hour and I was shattered and ready for my lunch, a little boy was ready for his lunch too!
Ethan had his jam sandwich, a packet of crisps and a chewy bar, I had a ham, cheese, cucumber and Kashmiri pickle sandwich and a packet of crisps. We then got his bag ready for his afternoon at the child minders so I could get some rest. Ethan kept saying he didn’t want to go but this is normal and he loves it when he gets there especially as Izzy one of his friends is there and Vicky the childminder is excellent too. She would then take him to school to meet up with mummy and Lauren after the school trip. My mum drove us the short distance to Vicky’s house and in he went happy as you like and I returned home for some rest. I didn’t really rest in fact I tidied up as I knew everyone would come in tired and the easier we could make the evening the better.
Everyone returned home after school and Lauren told me all about her school trip and that she was not with mummy’s group. She told me about all the flowers she’d seen and told me about edible flowers and buds. She even knew root vegetables and fruit.
Friday started early as I have to take some tablets three hours before my treatment to protect my kidneys so I was up at 6:30 to take those. Shortly after the whole house was up and it was a quick getting everyone ready so that when the grandmas arrived we were ready. Grandma without glasses was doing the school run and then looking after Ethan so that Natalie could come with me to the hospital. Grandma with glasses was driving us to the hospital. We arrived in plenty of time but were still waiting for nearly 40 minutes before we were taken through to the day unit. The nurse showed us to a new room they’d configured, this room used to be full of beds but now had only one bed and a whole host of chairs so they could take more patients. The sister explained that they were changing the way the unit operated and they were trying out different configurations to get the best system to work before they switched over fully in January 2013. It’s a credit to them that they are still able to deliver care whilst they do this, most businesses would shut down for a week, they simply can’t.
My treatment starts with an hours worth of hydration before the drug is given, again to aid protection to the kidneys. Natalie and I played cards, as we always do whilst the time ticks away. My drug was then given to me along with more hydration, this lasts for another hour. However after just 10 minutes I started to shake, so we buzzed the nurse and she stopped the treatment, did my obs which were fine and then went and got the Dr. We had a short wait for the Dr as she was seeing a patient in clinic at the time. When she came through the shaking had nearly stopped, she explained that I needed to continue as my viral count was still high. She prescribed some cover medicine to help, this made me drowsy. Whilst she was with me she explained that my liver counts had blipped and that I needed to increase my steroids to the maximum again and that she had arranged for my visits to Rotherham to go back to weekly. This made me very anxious and I felt very upset, thankfully Natalie was there to offer reassurance otherwise I think I may of broken down. Once my treatment was completed and the subsequent 2 hours of hydration were complete and I had been to the toilet about 100 times we went home.
I needed to collect my car from the garage as they had called to say it was ready, they had fixed the fault. We went home first and dropped some bits off before zipping to the garage to get my car, they’d even cleaned it which was nice.
Once we got back home Natalie and her mum got the kids into her car and went shopping as we had nothing in. My little sister came round to brother sit as I was still very shaken from the news that my liver numbers had blipped. I put the car seats back in the car before she told me to sit down and rest. We watched Flash Gordon which I am sure you’ll agree is a classic. It had just arrived from Love Film. When Natalie returned home we had pizza for tea before putting the kids to bed and relaxing for the evening.
Saturday was a big day in our house as we began potty training Ethan, now I am sure all parents will agree this is a very stressful thing to do. We thought we were prepared, some sweets for treats, DVDs to watch and 10 pairs of assorted pictured pants including Spider-Man and Thomas the tank engine. By lunchtime we had run out of pants and I needed to go and get some more, not only that the bread purchased the day before was off, it’s use by date was only a day after it was sold… Very naughty. Anyway I went with Lauren into town to find some pants and get some more bread. It felt very strange being out and about, it felt almost normal but at the same time I was very scared. Lauren was a little angel and did as she was asked and talked constantly telling me things she’d seen.
While we were out shopping I was shocked at how many coffee shops they were around the town hall, 4 to be precise but as someone tweeted me after I tweeted about it there must be a demand as they were all full.
Lauren and I had a successful shopping trip and returned triumphant with bread and pants!
Ethan slowly got the hang of the potty and on one occasion took himself to the potty and did a wee…
I made tea whilst watching Leeds Rhinos in the grand final, which they won. Before we put the kids in the bath and then bed. Natalie and I then did my IV before settling down to watch some Saturday night trash tv, lets face it there’s nothing on these days! We did avoid ‘strictly x-factor one hit wonders’ though.
Today more potty training was planned along with a trip to the farmers market, there was just one problem, the farmers market is next week! I got the wrong week so we went into town and opted for a coffee from one of the many coffee shops instead. We then headed home for more potty excitement. After lunch I took Lauren for a scooter and to get some more milk and bread. When we returned Lauren’s uncle Philip and Auntie Kirsty were at home with her cousin River. I’d not seen River for a long while and he has grown somewhat and loves his cars like Ethan. We all had a good natter and I lent Phil my spare iPad case as he’d recently joined team apple but not got a case at the time he got his iPad.
When they had left I quickly put on the dinner, roast ham etc, Natalie tended to potty duties. Once the dinner was done and eaten which is about now, we cleared up and have now chucked the kids in the bath so we can have some peace and quiet!
Like I said a busy week and next week looks like more of the same now I have an extra trip to Rotherham midweek.
Oh and we’ve lost Lauren’s homework!

Being in Control or not

After coming out of hospital following the treatment for the viral infection I would class myself as broken, I was almost recluse and the littlest of tasks was difficult. Not only that I couldn’t deal with the emotional/mental strain of things either.
Let me explain, before my transplant treatment I was a pretty confident, outgoing person. Nothing was too much trouble, I was rarely taken aback by sudden changes in plans ad I had the patience of a saint. Now after my transplant and subsequent set backs my confidence is shot, if I am not in control or have the feeling of being in control I am a wreck, sudden changes to plans freak me out, large groups and areas scare me as does being on my own and I have little patience. Now I know some of this will come back in time but I fear I’ll never be the person I was before.
As an example, since being diagnosed with the viral infection and having been suddenly admitted to hospital I fear all my hospital appointments, even the ones I know I can’t be admitted with (Rotherham photopheresis). This became incredibly apparent on my first trip back to Leeds, it was a Friday and Natalie had gone to play group with Ethan as usual and I was alone at home waiting for her return, listening to the radio trying to relax before I went for my medication. But as the time ticked nearer I began to panic, I called Natalie but there was no answer, this made me panic more. It got to the point that I made my chest hurt and by the time Natalie had come home I had convinced myself I had another problem with my chest and I was going to be admitted again, it’s a vicious circle. I called the hospital and my Dr wasn’t available so I was put through to a nurse who said I had to go to an assessment ward, then my Dr called and said I had to call for an ambulance as the assessment ward would not see me and I needed to go to A&E. Now I rang or an ambulance and specified I needed to go to Leeds A&E but they said that I would be taken to my nearest one which was Harrogate, so I declined and called my Dr again to explain. You can see how this just piled on the tension. In the end my mum drove me to the hospital where I just went and saw my Dr which was only an hour earlier than my booked appointment, my Dr organised tests of my heart etc and everything was fine, in fact it was just trapped wind, solved by a change in my tablets!! :-/ I stayed for the anti viral treatment and then went home much calmer and happier. But he whole experience was brought about by my own oak of self confidence and not being in control of the situation.
Yes that is an extreme example but it is a battle I have everyday, however I strongly believe the only way I’ll get back to my old self is to take on a little each day, which I am doing with the strong support of my entire family. I have plenty of challenges coming up this week which I will be doing some short posts about as I take them on..

Viral infection

The last significant update I wrote was 2 weeks post being in hospital and I felt I was beginning to recover, I am tempting fate and writing this post 2 weeks since being re-admitted again for a viral infection.
On Friday 14/9 I went to the hospital for a top up of blood to ensure that my Hb (red cells) were above 10 for photopheresis treatment the following Monday. I was feeling good and had gone to the hospital in good spirits. I received my 2 units of blood and as they were just finishing off a Dr I had not seen before came to tell me that my normal Dr was busy and that I was going to be admitted as I had a virus and not to shoot the messenger!!! I was in total shock, a virus? I felt fine! Admitted again why? When? The only information I was able to get was from this other Dr was I needed to have a particular treatment and that to have it I needed to be admitted and it would only be for the weekend.
Ok I thought I can do the weekend, can’t I it’s just a couple of days. I rang Natalie and my mum and told them, I was more in shock than anything, as were they. I then decided I would go to Ward 89 and see if my room was ready and what actually was going on.
When I got there the sister said my room was not ready they were still waiting for a prescription for the patient in there, a regular problem. So I said I would wait in the day room and could someone please explain what was actually going on. I felt myself getting crosser and crosser. I went to the day room and waited! Thankfully a friendly faced nurse appeared, in fact a nurse who I owe a great deal to as you’ll find out as you read more. She asked how I was and I explained my frustrations and she went off to find more information for me. ( this is the same nurse who found more information about my liver biopsy for me, she really does go the extra mile in care) she returned to tell me my room was ready and explained about the virus and the treatment. She didn’t know about the duration. I went to my room, I had view and a pay per view tv and waited.
Thankfully my regular Dr appeared, she asked if the other Dr had explained everything and I said no they hadn’t, understandably she was cross as she’d been out and left instructions which had not been followed. She went through with me so everything was a little clearer, also stating about the fact I may be able to go home on Monday, this was only a may as the drug needed to take effect. I don’t recall much of Friday evening other than it being frustrating, I was brought my things and my laptop so I could watch DVD’s it pained me to pay for TV.
On Saturday I started the anti viral medication, I had to have some tablets 3 hours before the medicine to protect my spleen and an hour of hydration.. Then 2 hours of hydration after… As well as having fluid whilst the drug was administered for an hour so that was 4 hours of fluid :-/ I felt like a water balloon. But it was needed to protect my kidneys.
My sister came and sat with me during the afternoon and we listened to the Leeds United game whilst playing cards, she was one of the only well people that could visit me as everyone was being struck down with colds.
On Sunday I started to panic as I needed to be in Rotherham for photopheresis treatment and I didn’t know what was being done, but the fab nurse and the great team on the ward organised a taxi for me for the morning, I was getting more worried and worked up each day I was in hospital. Sunday was a blur of emotion for me, I struggled to get through the day getting upset about most things.
Monday I was given a packed lunch and I got dressed and packed my stuff, hoping I would be going home after my photopheresis treatment, then waited for my taxi. We set off to Rotherham, I was nervous, very nervous in fact little things had become difficult even small talk with a taxi driver was tough. I arrived at Rotherham and went for my treatment as per my previous visit they were great and even organised transport for the next day and for my trip back to Leeds, I said I should be ok as I was hoping to go home. After my treatment I went back to Leeds, anxious to see if I could go home. The answer was no I couldn’t, I was devastated and it felt like a piece of me shattered, I missed my family more than I thought and not seeing Natalie as she was poorly was having a bigger effect than I thought, she was after all my rock, someone I could just be with not have to talk if we didn’t want but just have there. I broke down in my room with tears streaming from under my sunglasses, my voice had gone back to stammering and I couldn’t think straight.
Thankfully the calming voice of Natalie and the nurse who came to check on me and talked to me calmed me down. I pretty much sat in silence for the evening before nodding off to sleep.
Tuesday I went to Rotherham again, heavily subdued, hoping I could go home when I returned to Leeds, I think the nurses there had realised I was not myself and was struggling. They were very kind and looked after me. When I got back to Leeds I was told again I wasn’t going home but I could on Wednesday after I had some additional medicine to help fight the infection, this buoyed me a little but the damage had already been done, I had retreated back into hiding after being in hospital for only 4 days.
Wednesday came I was going home, first up the medicine, another mammoth time allowed, 5 hours although I tolerated an increase in flow so it was done in 3.5 hours. Now I had to wait for prescriptions, well I didn’t, I had enough medication at home to see me through to the following day so we said we would collect it on Thursday, good job we did as it wasn’t ready until lunchtime on Thursday. This is something which needs to be improved.
I got home and I was only able to cuddle Lauren as Natalie and Ethan both had colds, this was difficult both physically and emotionally. Natalie even had to sleep in a separate room (Ethan’s ) until she recovered. So although I was at home I was still alone, this was strange and didn’t help my mindset. But I was home which is where I like to be. I am still being treated for the viral infection but the medication is working.

Photopheresis

I was put forward for photopheresis treatment or ECP as its also known by my consultant at Leeds as my GVHD of my liver was not responding particularly well to the medication prescribed.
One of the only places you can receive ECP is at Rotherham hospital, which I did find strange that Leeds didn’t have a machine as they had everything else! Rotherham hospital is much smaller than Leeds, in fact very similar in size and character to Harrogate where everyone knows your name and you have an instant feeling of being welcome.
My first appointment for ECP was Thursday 6th September, it had come round very quickly. An appointment is spread over 2 days, you go for an afternoon on the first day then return the following day for an early appointment. Rotherham offer hotel stay for overnight or if you live within a certain distance a taxi can collect and drop off, this is an unusual service but does ensure the photopheresis ward runs like clockwork ( from what I could see). I took neither of these options electing to travel back home each day, largely due to the fact I was still very anxious following my release from hospital. It wasn’t a bad journey about 50 mins each way.
I’ll just jump back a few days because as part of the ECP treatment I have to eat low fat foods and avoid other foods, this all helps with the process as outlined in the really useful booklet I was given on my tour a few weeks earlier. Now those that know me will know I don’t do low fat, plus I needed to put weight on. Anyway Natalie carefully made sure I ate lower fat than usual for a couple of days before and over the 2 days of treatment. The kids tried some but vegetable pie wasn’t for them
On arrival at the hospital we made our way to the ward and when I opened the door to the ward the nurses made me feel very welcome. First up I was weighed, then I was taken for my walk, now this is a test I have to do each visit and it comprises of walking for as far as I can for 2 minutes round a set circuit. Once that was done they had organised for photos to be taken and my breath test too, it all ran very smoothly. The breath test was tiring and the same as I’d had in Harrogate before. I retuned to the ward to begin the ECP.
I was shown to my seat, a very nice, what could only be described as a posh lazy boy chair. I was very nervous about the whole thing and the nurses were great at re-assuring me of what was going to happen. I was hooked up vis my Hickman line to the ECP machine, if you don’t have hickman line it’s done via a needle in the arm. The ECP machine takes a set amount of my blood and splits it, much like the bone marrow machine, only it separates the white cells out, returning the red back to me. Once a set amount of white cells have been collected the machine calculates how long the cells will take to treat, this is where the low fat diet comes in, the fattier your blood the longer it takes. The nurses also calculate how much of the Uvadex drug to use. The Uvadex drug itself is interesting as it is derived from a flower only found on the river Nile and only comes ‘alive’ when subjected to UV light. Once the drug is added to the pouch of cells they are bombarded with UV light to activate the drug and then they are returned to me. Now due to the fact they Have been bombarded by UV I have to wear sun cream for 48hrs after the procedure and also wear UV protective glasses (sunglasses) inside and out. It’s a bit of a rockstar look and a couple of my friends have adopted the look in support while I wear them
The whole process takes 3-4 hours and throughout that the nurses were constantly talking to me about each bit and they were always busy with one thing or another. Once done we set off home, looking forward to day 2.
Day 2 started early as we needed to be at Rotherham for 8:30 this is normal for the second day. On arrival at the hospital we treated ourselves to a costa coffee and made our way to the ward. The nurse was very cheery and showed me to my lazy boy seat. Everything was set and I was very quickly on my way with the 2nd day. Whilst I was on the machine the Dr came to see me and arranged for my next appointment to be the following week as my GVHD is classed as acute. We were done very quickly and again the nurses were great just chatting away whilst doing their job.
So that in a nutshell is my take on photopheresis at Rotherham, however if you want more indepth detail including a video about the process then visit http://www.photopheresis.co.uk/

1st week out of hospital

The first weekend out of hospital was very tough, I’ll make no lies in saying I was lost I didn’t know what to do with myself. I was home but what was my role now! I did not know what to do, the slightest thing upset me. I was a bit of a mess to be honest. I had so much going on in my mind.
I broke down many times and thanks to my family they kept putting me back together!
Even simple things like a shower scared me, silly as it sounds!
On the Monday I spoke to the Dr as I felt I needed something to help me cope, yet more medication! I was due to see the Dr on Tuesday for blood tests.
I had got all stressed on the Monday because the hospital had moved my clinic appointment from Wednesday to Friday and this was a long time for me to go without knowing what my numbers were. Let me explain when You are used to knowing your blood counts on a daily basis and to suddenly go from that to a week it’s a shock to the system and difficult to deal with. I also received a letter from Rotherham to confirm my first photopheresis appointment on the Thursday and Friday so this really through a spanner in the works. Now going from a normal week it was getting busier and I felt the pressure and just cracked, thankfully Natalie who has and always will be my rock was there and we talked it through and with the help of my Mum we pieced the week together, which is how I ended up with an appointment to see the Dr on Tuesday.
On Tuesday I went to see the Dr and had a blood test, after much negotiation by the Dr with the day unit staff as I was not booked in. We went through Thursday and Friday and she prescribed me some medication for coping with the stress and anxiety. I put the prescription in and arranged to collect on Wednesday as I had another to get and I went home. The difficulty with the medication was that it was liver toxic so I had to return the following Monday at 9am for a blood test to ensure my numbers were ok. The following Monday I also had a visit to LGI in Leeds for an ear test prior to starting another medication :-/
Wednesday flew by and we collected medication as prescribed, Natalie and I also did my home IV again. But there was some bad news my liver numbers had increased, this rocked me and upset me greatly I feared being admitted back to hospital.
Thursday was a new chapter, first photopheresis appointment at Rotherham, I didn’t sleep well due to nerves, we set off at about 9:30 in the morning as we had to be there for 11am and not really knowing the way, thankfully it was very easy to find. See photopheresis blog for more detail on this.
The procedure was done much quicker than I thought and when leaving I felt much more positive. We drove chatting about how nice everyone was, and how early we were going to have to set off on Friday to be there for 8:30.
Friday started at 6:00 to ensure I had enough time for breakfast and to take my tablets, we set off at 7:00 and amazingly there was no traffic! On arrival the nurses were as cheery as ever, even early on a morning. Armed with my Costa Coffee I sat down and went through the procedure again. Now due to the photopheresis I have to adopt a new look which is explained in the post about photopheresis.
I felt the week ended on a higher note than it began with!