24th Feb - John Radcliffe & the diagnosis - Neuromyelitis Optica (NMO)

Had a reasonably night's sleep and was woken up at around six for obs and nappy change. Then dozed until 7.30. More obs (blood sugars below 10) breakfast of cornflakes and tea.

Bed bath and sheets change.

Visit by professor Turner with 6 students and explained that the blood tests had come back and I have Neuromyelitis Optica (NMO) or actually a form of it (NMOSD- NMO Spectrum Disorder. It is quite rare. The students asked questions both of me and the prof and the prof asked them questions. He said that Dr Leitte who was the specialist would be visiting me later to explain exactly what was happening.

Lovely Spanish nurse gave me a hair wash and we talked about Murcia where she came from and had gone to university and we talked about our visit to Ria when she was there with Gyles and a very small Mylo.

Physio and therapy assist and came and took me to the rehab gym for a physio session. Didn't do too badly - still feel as though I'm going to fall when I'm stretching but it's all about bring things back to the core. More movement in feet and ankles, so things are getting better.

Back to bed.

Dr Laitte arrived with her NMO team - another doctor and two specialist nurses who will be doing the specialist team.
It is a rare condition - only 700 people in the country. There are 2 National Centres for NMO in the country, and the John Radcliffe is one of them. Dr Laitte is lead researcher, so I am really good hands!

Treatment sounds a bit scary. I am going back on to Iv steroids ( and I had the first dose later).

They are also going to start the PEX (Plasma exchange). Basically it's the same as dialysis. They take the blood and put it through a machine that takes out the plasma which contains the antibodies doing the damage.  It then replaces this with new plasma and antibodies. It takes about 2 hours and doesn't have serious side effects - tiredness ( no change their, then!), possibly tingling in mouth and nose and metallic taste. This is due to the temporary decrease in something that I can't remember at the moment.

Lunch! Orange juice, Chilli with rice and sweet corn and ice cream.

Bit of a nap then lovely Spanish nurse got upset as she couldn't get the cannula in for the steroids and had to call the phlebotomist. She also had problems but managed to get one in my right elbow. Nor the best place.

Another doctor popped his head around and asked a favour - could one of his students come and talk to me? Said yes, but I was going to be moved to the other part of the neuro dept. (apparently the bay I was in before is really a neurosurgical bay).

Specialist NMO nurses arrived to talk things through. They are here 9-5 Monday to Friday and deal with me here, and afterwards and are available to families, GPs, physios etc. Gave me and Julio a booklet about NMO and I consented to be part of the research project as they are still learning about the condition. Unfortunately, because of my rotten veins, they can't use the first choice place of arms and because of the incontinence don't want to use the second choice of the groin
So it's going to be the neck probably. First session tomorrow, then again on Friday then break over the weekend and two more sessions on Monday and Tuesday.

Visit by PEX team who said that because of mobility problems I won't be going down to the unit but they will come and do it here.

Moved to different ward. This time my nurse is from Palma so we talked a lot about how much we loved northern Italy and Palma. Let's talk EU immigration!!

Visit from prof Turner with junior doctor who showed us the brain scans. I do have a brain, but there are changes that are not connected with the NMO but will need to be investigated separately. I think we were all much better informed and understanding of the situation.

Supper - apple juice, cheddar cheese salad, fruit salad. Then I was offered another meal (which I think was originally ordered in this bed) and then a third one arrived!!!

Sian and Juli left at 8 and I've been watching tv since. Ward is now dark and I've had a "look" from the nurse as they had got me ready for bed ( helping roll me on my side to avoid bed sores) some time ago.

So, goodnight - I won't be so late with the update tomorrow, but there was a lot going on today!

Love from me.

23rd Feb - John Radcliffe

Here is today's update,

Started last night with a 3/4 hour wash and clean up - am showing signs of pressure sores, so have been slavered with cream and moved so that I was sleeping partly on my side. Woken at 3am for  a nappy change (sorry!) and a move, actually slept reasonably well. 

Breakfast then another bed bath, move and sit up. 

Prof Turner visited to explain that the blood results weren't back yet, but that wasn't unusual as it was one that wasn't automated but had to go through several stages manually. More blood tests ordered and the. (phlebotomist came and unfortunately couldn't find a vein in my arm so I had it done from my wrist. Not a pleasant experience! 

Then my nice physios arrived and said that they wanted to try to get me stand up. I looked dubious but they explained that they had a hoist and that if I couldn't manage, that wasn't a problem, it wasn't a failure but they liked to move things on. they also wanted to put me in a wheelchair. So we manipulated me sitting on the side of the bed. Stop for a rest, have a drink of water and recover breath.  Strapped into hoist ( very wide belt around my middle with rope type things to attach to hoist). Put arms on armrests, and was hoisted to standing position - my weight on my arms and tested putting weight on legs - didn't happen! Lowered down to sitting again, another rest and drink of water, them we tried again. Still no weight on legs, so this time lowered into wheelchair.

Then it got exciting. I wheeled myself out of the bays and into the ward reception, turned around made my way back to my bay and reverse parked. The physio said I must be a good driver! In a few days, I may be allowed off the ward if someone pushes/comes with me, although it's going to be a fair time before this happens as I can only have about a few hours in the chair.

Then had lunch - bean and mushroom stroganoff, rice and peas followed by jelly.

Visit by two more students - I am beginning to be able to guess which ones will do well by their manner and the way they do the questions/ history taking and examinations, and wished them good luck for Friday. 

Had one more student. I think the total is now around 17! 

Absolutely exhausted so asked to be put back in bed, and moved so that I was lying on my side. Fell asleep and opened my eyes to find Julio sitting in the chair. It was a lovely wake up, although he'd been here for half an hour already!

Chatting and then supper arrived (apple juice, pilchard salad and cheese and biscuits). Julio went down to Pret a Manger and had his supper. Sian  arrived, and so we chatted and they updated me with what was happening in the office and home. 

Having now been in two rooms with views of the helipad, it was a bit frustrating to see on the news that two air ambulances arrived today after the explosion at Didcot. I am desperately sorry that they needed to be used, but I would have liked to have seen it.

Sian and Julio  left at 8 at the end of visiting, having sorted out my stuff so that I could watch Holby (OK, no need to comment!).

Just had my insulin and anti -blood clot injections (my sugars at 20 at the moment, which is OK lately (they had gone up to 32 at one point) I  am now waiting for next nappy change, and move into sleep position.

Good night all

22nd Feb - John Radcliffe Hospital

Sorry about lack of updates, so this will cover since the last one. Things aren't getting any better, but more diagnoses etc.

Had a lovely visit from mum and dad on Saturday who were driven up by their neighbour Bryan. Weather horrendous - all spray and torrential rain on the journey. They brought me presents, including home made ham sandwiches in case the food was grotty. I assure him that the food was good and that everything I ate was recorded ( presumably because that's what happens on a gastro ward.

The elderly Indian lady that had been in the next d lot bed was moved ( I think back t.o her residential home) and was replaced by a younger woman who had been taken ill with breathing problems on a flight. She was visited later by her husband and twin daughters (around 3 years old) so that brightened things up! They were bilingual so we had sentences of mixed English and Swedish. The alcoholic woman in the bed opposite said that she thought it was very clever that they were bilingual so young. duh!!! I didn't' think it was worth the effort of explaining language development.

Lady in diagonal bed continues to amuse/annoy. We had the usual light display ( she keeps pressing the light button rather than the call one). "Susan SUSAN - I can't see - it's too dark. Put the light on" " we can't pit the light on, it's the middle of the night". "What time is it?"  "Half past three". " why am I awake at half past three?". " I don't know, why are you awake?" " I don't know either. I'll go to sleep now!.

When Sian and Julio were visiting, they came and said that they had a bed at Oxford, so Sian packed my bags and I sat and waited. This was about 6pm. Waited, with my bag packed and at the foot of bed. Time passed. Discussion as to whether Sian and Julio would come with me to Oxford to see me settled in but neuro ward is very strict re visiting hours and they thought they wouldn't be allowed in. The transport ambulance finally arrived at 10.15 - they had  come from Gloucester. I shared the ambulance with  a lady who knew it all and was quite chatty at first ( which I could have done without, to be honest). But quietened  down as she felt worse during the journey. I was in a wheelchair, having been hoisted in on the ward, which I think was better than a bed/ trolley. It was very odd as the other lady was in her clothes, including coat, whilst I was in my hospital gown, socks and a blanket wrapped round me.

We arrived jus t before midnight ( the ambulance people didn't know which ward we were going to but t he other lady said it was on the third floor). Up we went, through a deserted reception ground floor area up to third floor where they rang the intercom but no one came. We decided that the 2nd floor ( neuroscience) was the best option (I'd already said that I thought that was where I was going but other lady more confident). More waiting at the locked ward door until someone came and let us in. I was wheeled to my room and the nursing team (sister/ ward manager Ruth got me sorted and settled at about 1. No tv or radio and I hadn't unpacked fully so no charger for iPad. Slept ok.

Sunday

Woke up . Blood sugars much better, but still having insulin. Professor Turner, honorary consultant ( it's a teaching hospital) with 4 5th year students came to see me. Took a long time as students asked questions and he explained things. Interesting. He ordered another Mir scan.

Julio and Sian came to visit and sorted out my TV and wifi, so now have entertainment. Blood sugars still high but much better, so still having insulin injections on top of everything else.

To much information warning - ignore next bit if you are squeamish.

I have discovered that  being doubly incontinent is no big deal - it is dealt with matter-of-factly by nurses and auxiliaries with care, sensitivity and with as much of my dignity as possible. Very big nappies!!!

Ok - you can start reading again now!

We have to order the next day's meals on a sheet. More choice than at GWH in that you can have stuff rather than sandwiches. I had roast beef, mash, mixed veg and gravy and cheese and yoghurt for lunch and a turkey salad and cheese and biscuits got supper. It is interesting that all components are classified (vegetarian, gluten free etc). Relieved to see that the orange juice starter is "balanced choice" ( as opposed to "energy dense - ie lots of calories), vegetarian, gluten free and - most importantly, easier to chew!

Visitors have to leave during meal times, so J&S took themselves off to explore the atrium, shops and cafes some more. We were told that the Drs would be happy to talk to them, but it didn't happy because it was a Sunday - fewer doctors so they were very busy.

Started getting some painful spasms - because of numbness not sure where it was other than lower back/bum area. Called the nurse, who called the doctor and I was given some pain relief. As well as paracetamol.

Not much more happening - no physio and in bed all day.

Not a bad night's sleep considering. Sleeping on your back is not right- I'm usually curled up or on my tummy.

Monday

What a busy day! Usual obs started at 6am and unusually I was still half asleep.

Went for another MRI  this took 40 minutes as they wanted a full brain and spine. I wasn't looking forward to it as the first one wasn't particularly good and I was worried about being claustrophobic. However I shut my eyes and tried to keep calm. They are very noisy, even with ear plugs in.

The spinal cord consultant (Dr Lane but I think her name tag said de la something) came with 7 students. They are in their 5th year and have exams on Friday, so were very attentive and questioning. I am now losing count of the examinations I've had, but it takes up the time.

She hadn't seen the scan, but has explained that there is an inflammation from my chest down, which is bigger than inflammations usually are. They need to find the cause because the treatment will depend on the cause. It could be an infection, or vascular ( not sure vascular what). Steroids are the first treatment for any inflammation, but after that they may do other things, including a flush which is like a cross between a blood transfusion and dialysis. They flush out the antibodies that are over enthusiastic and attacking the body and put new ones in. This could be just once, or several times.

Then I had lunch - orange juice ( easy to chew!) followed by mince lamb pie ( sadly energy dense) with boiled potatoes and mixed veg followed by a yoghurt.

This was followed by the physios ( chartered and occupational) who got me into the chair without the hoist. It was incredibly hard work - they put a banana board under me and I had to pull myself over bit by bit with my hands. I made it, but was exhausted. Physios decided that I'd need a hoist to get me back into bed as the bed was higher than the chair. I must admit I was relieved even if it was undignified.

More students - two this time. Also 5th year with exam on Friday. Apparently they had been told I was good to talk to! Another series of history taking, questions and examinations. As they finished, I wished them well for Friday and was told that I may be the object of more questions in the exam, but if so, we hadn't met before (which is what the first lot had said). As I am compos mentis, and if I am still here on Friday, I may have more students!

Visit from another neuro doctor ( they have 10on duty on weekdays) who said they had seen some anomalies in the scan. There are some areas of the brain affected as well. They'd seen this in the Swindon and had thought it wasn't anything to do with it.

They need to do more tests and reading ( not sure if that's a good thing or not!).  There are several possible causes of the swelling including genetic stuff, so they may do some DNA tests tomorrow. Dad - what sort of arthritis do you have? The steroids continue as that is the first call treatment for all causes.

Then told  I was going to be moved ( they had said that before as when I came the only room was the video telemetry room that they use for teaching and for consultants/ professors keeping eye on patients. Hoist on to bed, nappy change and then gathering possessions together. Easier this time as my table came with me. I am now in a ward of 4, not near the window (but that's no problem as it's only looking over the building). I miss the cemetery view when I was in the last room on my own.

That's all so far - I am here with Julio, awaiting my supper of corned beef salad and cheese and biscuits. My blood sugars are settling down, so I may risk the ginger nuts that came with my cup of tea. Debbie - keep the cake on hold, but I'm looking forward to it!

Another update tomorrow.

Love from Mum/ Boo / Bev

19th Feb - Great Western Hospital

Not such a good day today. I had a bad night - really odd not being able to feel/move muscles in legs but having quite a lot of pain ( think very tight support stockings). Then not able to curl up to sleep but only roll a bit on my side to relieve pressure on shoulders, although nursing staff keeping eye on possible pressure sores.

I am also having some sharp pains in my boobs, but that can be a random side effect. Having paracetamol but have been offered other pain relief - problem is that most pain killers have an adverse effect on constipation.

No physio as I was awaiting an enema ( which didn't work - dread to think what happens next!). This meant that I've not been hoisted out of bed onto chair ( which I enjoyed yesterday although I did keep thinking that I was going to topple forward)

Dr has spoken to the neuro unit at Oxford and I will be transferred on Sunday to begin next lot of treatment on Monday.

Slept (dozed) a bit this pm instead of the physio.

Lunch was fish and chips and mushy peas and apple (not eaten Apple yet).

Nursing aux went to lot of effort to wash my hair - shampoo cap wasn't very effective. New method Shampooing was fine, but rinsing is clearly a problem

I think that's it- listening to Any Questions.

Good night

Bev

17th Feb - Great Western Hospital

As more family and friends wanted updates, the email was sent to more people than just my parents!

Today's update (as at 16. 30). I have just had a team visit from the physio team (chartered physio in charge; Anna "my" physio; and two students). They put me through an exhaustive series of exercises, including bed ones for legs and feet, and sitting on side of bed to establish and strengthen core functions. 

I felt that I was going to topple over, but apparently, that is the point of the exercises - to get the core working by balancing and correcting. 

Anna is going to give me some more exercises to do, but she (or students) will oversee those. I am to get out of bed and into a chair for a couple of hours in the morning and afternoon as that helps with the exercises, but will need a hoist ( no comments about beached whales, please!) because of the lack of mobility and, more importantly, strength. Kitten may be more appropriate than whale.

I am also going to have some kind of boots to wear at night so that I do not lose the advantage of the exercise by getting feet in wrong position whilst asleep. The brain and muscles have to learn to work together again.

Because I am an unusual case ( back to the one-in-a-million), I am not able to go to the private ward at the moment as there doesn't seem to be a consultant covering my issues here all the time ( or at least enough of the time). The care I am getting is very good; it's just the extra privacy (and free parking for visitors) that's nice.

My blood sugars are horrendous - nurses and I play "guess the number" each time. This is due to the steroids, so I'm also on insulin. I am also having extra meds to counter the gastro effects of the steroids. I'm rattling!

My hair is horrible. I had a shampoo cap wash yesterday ( think shower cap with the shampoo and dampness inside) but it's not really effective. I'm also getting a bit clammy fairly frequently.

I think I'll start having weetabix or porridge for breakfast - am a bit fed up with toast and marmite and I have to get the nursing auxiliary to spread it for me. I've also given up on drinking tea as it's usually a bit stewed, so am drinking instant coffee with half a sachet of sweetener. 

Lunch is surprisingly good - soup (but I can't manage that as well as a main course) then today I had chicken in mustard sauce, mash and mixed veg with a nice fresh brown roll and a pear. Tea will be a choice of soup and sandwiches. 

When the medical bit ( infection and inflammation) is sorted out, there is the possibility of being moved to a community hospital to continue the physio until both physio and occupational therapists are happy that I'll be ok at home. No idea if, or when, this will happen and if it does which community hospital , but Malmesbury is handy for Waitrose!

I feel very guilty about leaving so much work in the office to Sian and Julio as they have enough to do without taking on my office stuff and worrying about me. 

I think that's about all for now - I'll send another update tomorrow. Thanks for all your good wishes. 

Love from a fed up and tired me.

16th Feb - Great Western Hospital

So this is the first email I sent to my parents in Penarth, but since things have been developing I've decided to add all my emails into blog posts.

Hello! Today's update. 

I have been trying to do my physio, but to be honest, it's not going too well ( they did say it would take time). 

I've been examined by several student doctors ( some of whom are post grad) as I am a one-in-a- million so they want to see me! 

Blood sugars are ridiculously high because of the steroids, so am now on increased insulin following visit from the specialist diabetes nurse.

 Fellow patients in ward are interesting ( and sometimes noisy but can be quite funny!). 

Can't remember if I said I'd also had a visit from the occupational therapist to start planning discharge, although I have no idea when that will be at the moment.

Forecast for tomorrow is hopefully being moved to the private ward where I was for the kidney. That means private room, free wifi and tv, and free parking for visitors ( within reason). 

Sian is being a star, holding the office together as well as visiting. 

Sleeping difficult as can't move much. No feeling in legs at all nor up to my chest. Bed baths are quite nice! 

Food quite good. Care really good. 

Will update you sometime tomorrow!