Back in The Royal

Temp went up yesterday. Came in today at two, very quickly through A&E after B phoned the blood ward and they found me an isolation room on another ward.

Feel decidedly ropy but better than last night however throat and upper digestive tract really painful.   Discussed pain relief with both blood docs including the registrar when she called in again on her way home.

One of the ward nurses called in about 9.15 to say the were just short of on antibiotic and I asked about pain relief and she said paracetamol tablets to which I replied there was no way I could swallow them.  She then offered me soluble which makes me barf at the best of times.  After I said no again she said she’d look into it!  Fortunately a much more agreeable lovely nurse just did the medicines round and she’s hooked me up to one, given me a liquid other (that I can have every few hours to get on top of it) and gone to get me very small tablets of a third.  You never know I may even stop drooling on the pillow when I sleep.  I have been prescribed others as well but they are big tablets so might be a bit adventurous.

I also have a skin reaction that the registrar likened to psoriasis.  It’s quite sore on my hands/wrists but also visible on my face, shoulders and round my armpits – it started there last Thursday and my deodorant had done this one before after chemotherapy but not as much as this – especially when I stopped using it.  When it was being discussed with the two docs B started prodding his finger up my short jim jam top sleeve in a completely inept, clumsy and totally unprovocative manner!

The room I’m in on the Infectious Diseases ward is very nice and has its own ensuite shower room however the lovely nurse is moving me later as its a negative pressure room and is not the best room they have since my blood tests have shown I’m neutropenic.

And B got carried away with the phone before we left home, after ringing the blood ward he phoned Auntie Ann to let her know what was happening and she turned up at the ward just minutes after us.  She didn’t tell him she was coming and to be truthful I wouldn’t have phoned her until later as she was supposed to be going to the Magic Rugby League Weekend at Old Trafford, Manchester to watch her team  the Saints play their local rivals, wigan warriors (I daren’t use initial caps just in case she ever saw) and the phoned the friends she was going with and came to see me instead!

Peritoneal Dialysis Part 2

Bud had rump steak for his breakfast so I think we can safely say he felt better today. He did throw up last night just as he was heading for his pre-bed wee. If I’d been quicker I could have got the kitchen roll underneath it. Fortunately B was quicker at passing me the sick bowl after my first mouthful of food at tea time. I then got a look when I answered in the negative to the question ‘Have you had any anti-sickness today?’. I had felt a teeny bit ropy at lunch but it passed and I was able to carry on with my watercress bap so I thought I’d give the tablets a miss.

So back to the PD –

the chance of infection does increase with the use of PD as compared to the use of a neck line. The glucose rich fluid and its warm temperature is kinda a holiday heaven for bacteria. Infections however are a risk with any line and the antibiotic line lock used in the renal line reduces the infection rate by 80%, these locks aren’t used with Hickman or PICC lines so by that comparison they would also have a greater incidence of infection and I wouldn’t hesitate at having one of them. The glucose fluid isn’t as sweet as the one previously used

baths are out as sitting in dirty water isn’t good for the cleanliness of the line. Some people do have very shallow baths but where’s the fun in that? Swimming however is not only allowed but encouraged. A waterproof dressing is popped over the exit/entrance site (I can’t decide if it’s where the line comes out or goes in) and then removed and showered down as soon as out of the water. The chemicals in the pool keeping it clear of bacteria – but what about other people’s wee?

the line itself is inserted under either general or local anaesthetic. I said that I’d prefer local. It’s not that I’m looking forward to it but I can’t say I’d be head of the queue to voluntarily have any type of line fitted. I’m okay when it’s happening but get a tad anxious before hand – more the thought than anything. However with the local there’s the added bonus of IV tranquiliser which will be a first and I understand that general generally carries more complications than the procedures it’s used for

PD is only recommended for five years. Someone has been having it for 12 but this has been his choice and he is aware of the recommendations. Apparently it came to light that it can make things inside squishy and more prone to infection after a certain time so a time period had to be be put on it and it was five years

if the line gets infected then it’s a case of antibiotics, removal of the line and then a new one can be put in approximately six weeks later

and the final consideration is storage. A 30 day supply of the bags of fluid amount to about 6′ x 4′ x 4′. B has suggested they go in the garage which would be acceptable or a shed will be provided to go in the garden. The only thing being that if the weather was really cold a week’s supply would need to be brought into the house as the machine doesn’t like cold fluid. B is also now wondering if we can get two weeks’ worth delivered direct to wherever we go on holiday as he doesn’t think there’d be room in the car for us three, out luggage and the boxes. It has been suggested that he just stick a trailer on the back of the car – not by me – and that went down like a lead balloon

So the nurse has added me to the list and I’ll wait to hear about getting the line put in and then once it has settled and healed round the fuzzy bits that secure it I’ll spend up to a week being showed at the hospital how to do it both with the machine and manually.

I can’t wait, I’m already thinking ‘Will I sleep tonight?’ knowing that I have to get up early in the morning. I’d need to call into the Blood Day Unit for blood tests as required whereas these are taken on dialysis now but that’s no hardship and I know that if my haemoglobin was 8.0 as it was on Saturday I’d get some blood that day, on renal however it was reviewed by a doctor and I may or may not get some tomorrow depending on what they say then. (They don’t routinely transfuse they tend to try stimulating the body’s production – which doesn’t provide the nice quick fix of getting some fresh HB rich blood.) The HB level certainly explained why I felt so listless on Saturday morning even after a nap. I didn’t do much else for the rest of the day but I have felt less tired yesterday and today – maybe because I knew so haven’t pushed doing anything but did manage to go for a walk with B and Bud. My platelets had also come down to 101 and my neutrophils were 1.6. B was a tad worried that my counts had gone down instead of continuing the upward trend.

Yesterday I had a couple of low grade temperature readings 37.6 degrees celsius (99.68 fahrenheit) and 37.4 degrees celsius (99.32 fahrenheit) from morning through to afternoon but by tea time it had settled back to 37.0 degrees celsius (98.6 fahrenheit) and it’s been fine today. Where my line goes in/comes out the site has been a little red but I had it swabbed two weeks ago and nothing showed up and it’s not changed since.

Hopefully I’ll get a couple of units of blood tomorrow and be full of beans by Wednesday.

Oh, and when I said Bud was feeling better – he is but it’s done nothing for the odour he’s been producing – we’re lucky it hasn’t made the paint peel.

There some knitting going on!

Firstly thank you for all your good thoughts and wishes – they certainly seem to be working.  I have done more knitting today than in the whole of the past week.  It’s a case of not knowing just how bad you’ve felt until you feel a lot better.  Yesterday wasn’t too bad but by the time Auntie Ann arrived I could barely keep my eyes only and she confirmed that I did indeed look really tired around my eyes.  I had a wash after she’d gone, changed my jim jams and was in bed watching a film by 20:30.  I did a few tiny rows of knitting and then dozed until I had my IV antibiotics at 23:00 and then I slept until 05:00 when I answered a call of nature and woke up again at 07:45 when I felt as rough as a bear’s behind (not too sure who coined that phrase and have to admit I would be tempted to find out if I ever got within bear’s bottom grabbing distance).

I struggled with my weetabix and ate two cream crackers instead but by 10:00 at the latest I felt GREAT.  There’s been a smattering of intermittent tickly coughing during the day but other than that GREAT.

My cannula was a bit temperamental with the flush after the antibiotics but when the nurse confirmed it was the last one she wasted absolutely no time in wiping that cannula out.  I gave it half an hour to settle and then went for a shower.  It was fantastic with no cannula to either hide in a latex glove or hold above my head in an attempt to keep it dry – neither of which work completely effectively.

With the cannula gone, knitting was bliss.  I managed to connect to the hospital web access – would you believe I couldn’t get it because I use Google Chrome as a browser.  I switched to Internet Explorer and it was fine, well not fine enough to watch video so I ended up on bbc iplayer radio and can heartily recommend ‘Count Arthur Strong’ – I laughed until I cried – although it’s not everyone’s cup of tea.  I could well imagine B wouldn’t even raise an eyebrow let alone a snigger.

I finally got my phone to talk to the lap top so here’s my knitting as at yesterday…

my additional knitting as at today…

 another arm, two body and a head part (phone and laptop had another tiff)

 my surrogate Buddy seagull (our neighbour says I shouldn’t bring him home)…

which is so subtle it pecks on the pane to get my attention.

 My previous surrogate Buddy…

With regard to medical matters – my blood counts from yesterday are substantially improved on last Thursday (normal ranges in brackets) –

Haemoglobin – 10.1 (11.8 – 14.8)

White blood count – 3.4 (3.5 – 11.00)

Platelets – 78 (150 – 400)

Neutrophils – 2.1 (2.0 – 7.5)

My kidley function is slightly better, my liver is the same in a – one result is better, one is worse kinda of balancing out way.  Apparently the ultra sound on Saturday didn’t show up any kidley stones either.

 Temps have all been 37.5 or generally lower.

 The swabs taken yesterday show I have plain old rhinovirus (a la the common cold) and not flu – although I think me and several of the nurses knew this – I mean I’m not even snotty enough for a full blown cold.  This means that staff entering don’t have to either wear or mask or throw things from the door, which is a bit of a sod if it’s a cup of tea.

 The Prof doing the ward round yesterday mentioned I could possibly go home tomorrow but the Registrar yesterday and today said he was going to speak to our consultant over the kidley/liver results.  So we’ll have to wait and see – as the nurse and I discussed earlier I’ve been in enough to know that you don’t take it for definite until you’re walking out the front door.

 And I may have mentioned but I do feel seriously, majorly, spectacularly better now than at any time since I woke up last Tuesday morning.  Plus in the interest of keeping you all informed I just physically forced myself, at the risk of getting a temperature, to watch the beginning of the bank heist movie, Takers, again. (What can I say – you’re worth it!) I am now able to confirm that the bare naked, definitely un-hairy, peach like bottom is at 14 minutes 22 seconds and must be on screen for all of five seconds – which on Monday with the cleaner watching felt like about five hours!