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.

Peritoneal Dialysis

After flitting round making sure the house was reasonably presentable for the PD* nurse she came in through the front door, stopped briefly in the hall/dining room and then we went through to the lounge. This was without venturing anywhere near the kitchen or upstairs at all. Mind you, you could guarantee that if I’d not put things away (like B’s socks which got me whinged at – as well as his car he’s precious about his socks, although pointing out that the ones I’d put away had gone onto piles of the same logo appeased him somewhat) she would have been checking under the bed and coming face to face with the extremely dusty barely used Pilates machine.

From what this nurse and the one from Thursday said this is what happens with PD –

a cannula is inserted into the peritoneal cavity – gulp! Cannula – sometimes irritating pointy thing that can make can make your toes curl that goes into the back of a hand or by the time those veins have been tired out somewhere in the forearm or crook of the elbow. But no, the similarity ends at the name it’s a very soft plastic tube with a coiled bit at the end (which is more effective at keeping it in place than a straight piece) with lots of irrigation holes in it and two fuzzy wooly bits that encourage tissue to heal round it – one sits in the abdominal muscle and the other just under the skin. At the end of the outside bit there’s a plastic end with a tap (vision of something like the tap on a beer barrel or box of wine) which twists to open the line and has a screw cap on the end which covers a bit you DON’T TOUCH. The end can be secured when not in use round the back or tucked into a bra – well if you’re female or would it be more politically correct to say ‘well if you wear one’

the peritoneal cavity is then filled with fluid. This fluid then through a process of osmosis (a word I learned from the list of 100 questions our school chemistry teacher, I think he may have been a professor, had the class learn and randomly tested us on) is able to filter toxins

the fluid can be removed manually four times a day or the process can be done overnight by machine. If it’s done manually about two litres of fluid sit in the abdomen all the time and are swapped for fresh after getting up, before going to bed and twice in between at four to six hour intervals. Needless to say I said I’d prefer the overnight method as this would leave my days free but both methods are not exclusive and can be interchanged to suit. The machine is quite quiet but does bother some people – so I think that means that Bud and I should be okay but you can bet it’s gonna bother B

PD is gentler than HD in that because it removes toxins every day there is no build up between dialysing. Whereas HD produces a saw tooth effect ie, clear out, build up, clear out, build up, clear out, build up, build up

one of the big factors is that PD can preserve any existing kidney function whereas because HD is so efficient at what it does the kidneys kinda go ‘well we don’t need to do anything’ and stop trying. So now would be a good time for me to move over while mine are still doing something toxin wise and of course I’m back to weeing again – goodness knows although I think I’d deal better with a fluid restriction this time I wouldn’t necessarily like it

another big factor would be a renal diet doesn’t have to be adhered to however I don’t follow one at the moment anyway – not because I’m being naughty but because I don’t need to as the relevant levels such as phosphate and potassium aren’t high

I’ll have to share the rest tomorrow as Bud’s had an upset tummy today and has been indicating that it needs rubbing and it’s a bit difficult to rub with one hand and type with the other. Bud’s tummy has been a bit temperamental since he joined the family, indeed I recall him eating grass the day after he came home, and we have mentioned it to the vet. Usually once he’s ‘been’ it settles down but not today. Indeed when B went to work we did our usual routine of giving him a kiss and a hug on the kitchen door step – well I kiss and hug him and Bud stands at the side of me waiting for his cu-tch (little tickle) and then we stand at the porch window and wave as he drives off to earn us some some pennies but not tonight. We both left the kitchen but I arrived at the window and Bud went and got back on the settee where he’s stayed since. But where he would usually settle and only shift occasionally he keeps moving round like he’s not completely satisfied – I may think this is happening more than it is but he definitely keeps raising his head and looking not too happy and looking round if I stop rubbing.  He even turned down some rump steak at tea time although did wag his tail when initially offered it and the second and third time too kinda ‘I appreciate it but no thanks not right now’.

* PD – that would be how us in the know refer to peritoneal dialsysis, HD being haemodialysis. I personally have been in the know since Friday afternoon when I found myself using the terms during a conversation with B, prior to that everything was just dialysis.

Sleepy Zombies

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That’s Bud’s contribution to today’s post.  He was lying at the side of me and put his head on my lap completely ignoring the fact that it was already occupied by the netbook.  Or, for all I know it could be a secret message to someone – ‘SOS.  Come get me I’m sick of tinned salmon.  They only give me pink because it’s cheaper than red’.  Okay maybe I should stop watching Homeland.

Speaking of watching things, I watch a fair amount of TV series/films that involve zombies, vampires, etc you know the sort of post apocalypse type things.    Now I’ve always thought that with my coping skills and initiative, and as long as I could obtain and learn how to use a gun or cross bow, I’d manage just fine particularly if the zombies were the really slow ones from the traditional films – the faster modern ones would give Usain Bolt a run for his money.  However, its become increasingly apparent that I could only manage now if I had a medical team (blood and kidley) along with a whole shed load of medication (particularly antibiotics as they always seem to be looking for them) and a pharmacist,  hand sanitiser (because people tend to look grubby in these sort of things), food (not just food but good food ‘cos treatment can make you uber fussy particular), a souped up mobility scooter (because I wouldn’t be able to run)… let’s face it learning to shoot straight would be the least of my problems.

 Oh and a dialysis machine.  Speaking of which I was so pooped yesterday after not being able to sleep on Monday night.  Usually I don’t have trouble nodding off but B had commented a couple of times while he was off on the fact that I was still awake when he came to bed over an hour later than me (and Bud) on pre-dialysis nights.  I think its like two friends who always had trouble sleeping on a Sunday night before work on a Monday.  I only said to my Auntie Ann the other weekend that I’m not as comfortable going unlike when I was going to the blood Day Unit this time last year.  We decided it was because I had to stay in one place for four continuous hours whereas even though I was sometimes at the Day Unit from 9.00 am until 2.00 pm I theoretically wasn’t restricted for most of that time.

Well Monday night I didn’t think I’d have any trouble sleeping.  I’d been to the Wool Shop in the morning and then took Bud for a double wander in the wood after deciding I wasn’t up to taking him for a walk on my own as I’d got a bit breathless walking through town.  Then when I had a rush of energy later in the afternoon I thought it would be a good idea to steam clean the floors while B went to his mother’s.  Bud has issues with the steamer – pouncing and barking at it, then settling down but eyeing it suspiciously when not on the bed avoiding it completely.  The phone rang when I’d just about finished downstairs and thinking it might be B I rushed to get it and ended up panting by the time I answered it – okay I might have been panting a little before – it wasn’t B but fortunately it was someone I knew well so it wasn’t a heavy breather phone call in reverse.  We chatted for about half an hour which was just as well as it gave me chance to get my breath back.  By the time B got home I’d nearly finished upstairs – I mean it’s not like it’s hard to do and I didn’t move any furniture just Bud’s basket, bins and a few other small things.  After all this I thought I would sleep really well that night but that wasn’t the case at all.  I’m just going to let that ‘all this’ sit there even though compared to what most people do in a day and certainly what I used to do ‘all this’ is ‘sod all’.

I made a bit of a boo boo with my painkillers too.  I took some at 4.00 pm just after I’d started and thought that if I took the others at 8.00 pm I’d get the benefit while I was still awake rather than taking them about 10.00 pm.  We (me and Bud or should that be Bud and I) went to bed at 10.45 pm and I just couldn’t nod off.  My back was cranky – that level where during the day it could be managed but when you’re trying to nod off it’s a bit distracting.  I finally thought ‘Well, I could take another Tramadol’ and went down to the kitchen to get one to discover that it was 1.02 am.  I went back to bed and contemplated getting up for an hour, having a drink, doing something crafty and then going back to bed as I have read that if you can’t sleep you should get up for a bit rather than just lie there but I kept thinking ‘No, I’ll nod off soon’.  I finally got up for a drink of milk and some malted wheat crackers and it was 3.22 am.  Doh! I had to get up at quarter to six.  As it was I did nod off and woke up wide awake at 5.23 am just before B pulled onto the drive.

I thought I’d at least have loads of time to drink the cup of tea B made us and eat my Weetabix but didn’t factor in throwing up after taking my tablets.  I took an anti-sickness and had some breakfast and fortunately took a sick bowl lined with a Poop Scoop bag with me as I saw the Weetabix and tea again on the trip to the Royal.  I probably would have made it without puking but the driver got a call asking him to go pick up someone who wasn’t originally on his list and me and breakfast parted company on the extended trip.

I tried to get a sleep yesterday tea time but think by that time I was over tired (I always thought that was an odd thing to say – that you’re too tired to sleep but it turns out to be true) and then the phone rang.  It was the friend who’d phoned on Monday and she was ringing to say that she thought she may be coming down with something so wasn’t too sure if she should visit last night.  We decided that I was probably at little risk of picking anything up as long as I didn’t lick her.  In case you’re wondering it’s a phrase that makes it easy to differentiate between infectious and contagious eg, chicken pox is contagious as you have to come into direct contact with stuff from the blisters either directly or through touching contaminated clothing so that falls into the licking category.  I know it’s not an exact scientific method but it works for me.

Just before Chris left at twenty to eleven I turned into a bit of a zombie myself and staggered upstairs straight after like I’d had a cup of whisky instead of tea while she was here.  I was asleep particularly before my head hit the pillow and got up at quarter past eight feeling not too awake but much better (with a little bit of delay onset muscle soreness presumably from using the steam cleaner – what a wimp) which is just as well since I need to take the car for a little spin later (only to the Post Office or I could wait until B gets up, mmmmm I’ll think about it) and I’m going out for my tea with a couple of friends – which reminds me I need to keep on top of the anti-sickness meds today just in case!

Bud’s taken over responsibility for being sick today.  At least I manage to get it into a pre-lined sick bowl and don’t just do it on the dining room floor.  Thank goodness for hard flooring.

Twisted cables

I knew I’d have to do it – maybe if it had been for me I would have fought the urge but as it wasn’t I undid the back and rectified my cabling boo boo.  Then I undid it again as I’m obviously still behind with my sleep (well that’s my excuse and I’m sticking to it) and made another boo boo when I reknit it because I couldn’t do two things at the same time – don’t tell B he readily accepts with me as a prime example that women can do 16 things at the same time whilst men can’t do one and a half.  Two of our neighbours called round yesterday afternoon and while knitting and chatting I missed another cable twist out of the new knitting.

Mind you it’s not like I need much of a distraction at the minute I also had to undo the left front twice last night and in fact somehow the right front ended up as the left front (ie, the v-neck slope was on the wrong side) and vice versa – so although the right front was ‘right’ it should have been ‘left’!

Fortunately the sleeve turned out to be a sleeve AND had the correct amount of cabling.

It’s not just knitting I’ve been having trouble with.  I tried a logic puzzle last weekend – just one of the simple ones at the very beginning of the puzzle book that only have three answers and with a great deal of effort I got the first one right and the second one completely wrong.  It would have been easier trying to plait fog.  I can’t say it’s got much better since.  However a friend who called round on Wednesday night said that she was glad to see I had my ‘Paula sparkle’ back as it had been a while.  I must be at my best at night as I’m pretty sure B wouldn’t say I sparkle in a morning!

And now I have some potentially very good news from the visit from the renal doctors yesterday.  Basically my kidney function is borderline for coming off dialysis.  I’m having dialysis as usual tomorrow then I get to wee into a container again for 24 hours from 6am Monday to 6am Tuesday and go in for blood tests on Tuesday but no dialysis.    It could be that the amount of dialysis can be reduced if it can’t be stopped altogether and the dialysis type changed and I could do it at home.  I have to admit the brief description of tubes in tummies didn’t exactly have me saying ‘Yay, sign me up now.’  I was home from dialysis yesterday by 12.30 as B came and picked me up.

I’m still getting the migrainy visual disturbances but fortunately no follow up headache.  In fact last  night I got the netbook out to blog and then couldn’t see the screen clearly enough – indeed it’s going funny again now.

My mouth is a teeny bit sorer which may, or may not, have something to do with Sherbet Lemons!

I would also like to point out (and I think that as I can I need to blame either disturbed sleep patterns or medication for this) that it doesn’t constitute a REAL fire unless you need to call the fire brigade – even if the flame is a foot high and it nearly makes your husband enter a state of shock.

Other creative spaces can be found here.

‘There’s nothing like a day out’

B was heard to say as we got back in the car today after going to Liverpool for our first kidney clinic appointment.  ‘Yes’ I replied ‘and that was nothing like a day out.’

I’d inadvertently cramped our dining possibilities by telling Auntie Eleanor at weekend that B would pick her up and bring her to visit this afternoon.  Since our appointment was 11.30 I didn’t think it was physically possible to get to the Asian restaurant that had been recommended, by a friend of Sean, eat and get back.  We’d only said on Friday it’s four months since we actually ate out and when we asked for my blood counts on Saturday my neutrophils were high enough to deal with bacteria laden restaurant food – though with all the spices potentially involved it would probably have been a safe bet anyway.  I’d had a GCSF injection on Friday and my neutrophils on Saturday were 12!  Yes 12 – normal range is 2.0 to 7.5 and I don’t know when mine have ever been near the higher end of this so it took a bit of digesting before I remembered the neutrophil boosting injection.  As it turned out I’d decided that I’d rather see Auntie En than eat out on this occasion so I wasn’t waiting for din dins.

I’d thought that after a long day yesterday we’d just nip out to the Royal today, have the appointment and get back home in under three hours.  Yesterday no ambulance transport had turned up by 7.00 to ferry me to dialysis so I rang and they confirmed that the team had left and I was on the list.  They then rang back at 7.30 and said they’d sent a taxi.  In the end I was only hooked up to the dialysis machine at quarter to nine so finished at quarter to one but didn’t have to wait that long at all for a lift home.  The trip home itself however involved a visit to a nearby hospital to collect and then drop off another patient and then a stop of an hour and a half at another hospital as the patient there couldn’t be located.  They or rather we, went to every conceivable collection point.  It turned out that another team had collected her hours ago but no-one had told our crew that she was no longer their responsibility.    At least I know that if I go AWOL at any point they won’t leave without me.  B had decided that he was going to come get me and when I rang him to say that we were finally on our way it turned out he was nearly there – although he didn’t tell me that.  The first I knew was when we pulled onto the main dual carriageway and stopped at traffic lights and my attention was caught by someone shouting outside.  My attention was peaked further as I thought ‘I know that voice’.  B was stopped at the side and was shouting to the driver ‘I’ll take Paula home’.  They pulled over at the nearby bus stop and one of the ambulance guys carried all my bags and coat to the car and explained/apologised to B.  So from being ready at just after six AM it was half three when we got back home.

As it turned out today we did do it in under three hours.  Well, we did the trip to the Royal and the trip home but we didn’t get the clinic appointment.  No, it wasn’t me, I had the right date/time.    We’d waited for a bit in a busy waiting area and then decided we’d go for a drink.  The receptionist said we should check with one of the nurses as there was only a few in front of me in the clinic I was in.  The nurse asked what time my appointment was (11.30), said that they were up to quarter to ten and gave me two free tea/coffee/cup of water tickets.

We had our free cup of tea/coffee/cup of water and in fact I hadn’t quite finished mine when our buzzer went off and we headed back to the clinic.  The receptionist said that the doctor had just left and the nurse would have a word with us.  As it happened a very apologetic health care assistant came over and explained that she’d weighed me and taken my wee sample but had put my file in the transplant pile rather than the renal pile and the consultant had gone without seeing my notes but they were going to see if one of the registrars would come down and see me.  About five minutes later we got called in and told that the registrar was in a meeting but either someone could see me on dialysis tomorrow or we could come back next week.  B is back at work next week so we opted for tomorrow.  I said ‘Well at least we got a free cup of coffee’ and she said ‘Well you would have got that anyway’.  WHAT! – we’ve never had a free cup of water let alone tea or coffee at the blood clinic and we have an ‘ology in waiting there.

On the upside all this transportation has meant imposed craftiness time and indeed after making a denim and white stripped Myeloma Buddy for a member of the Royal catering staff a friend of hers asked for two too…

and the catering lady asked for something else for her first grandson who is due in May.  She was telling me that her son and his girlfriend are going to give the baby her younger son’s name as a middle name since her younger son had died a few years ago at 19 after being ill since he was six weeks old.  You know that old saying about treating people considerately because you never know what things they are dealing with is sometimes so true.

Anyhoo, we opted for a little aran type jacket age six to nine months which I started yesterday…

but there’s a boo boo! I noticed something was amiss when the pattern on the front wasn’t finishing at the same point as the pattern on the back.  Now I had trouble working out where exactly I’d gone wrong and I’m pretty sure it’s not that noticeable and I could probably get away with it but could I live with that?   Probably not.

And here’s a photo of Bud that I’ve been meaning to take for ages but have never seemed to have the camera to hand at the right time…

he starts to get off the settee and then just stops with this front legs on the floor and back legs, stretched or bunched up, or in this case 50/50 still on the cushion and then just stands there for ages.  His Auntie Chris told him he looks like a dork but I find it quirkily endearing and it’s not like I’m biased or anything.

Now I’m not one to moan…

well B may disagree and certainly would tell me that I don’t moan at the right time – from what he can remember anyway… but moving swiftly on.

I’ve never had any complaints about treatment on the haematology ward and indeed have only praise and this has nothing at all to do with a conversation yesterday with one of the nurses involving the disclosure of my blog! But let’s take a little look at the tablets I received in dialysis on Saturday night.

After being asked about my drugs chart on Saturday night and saying I’d have my tablets when I got back to the ward I enquired about it. Only because the medications on haematology are now computerised, with portable computer equipment the size of something from Robocop, so there are no longer card charts. One of the nurses printed me a list of tablets so that I had it to hand should the need arise.

Off I went on Saturday with my list to hand should the need arise. It did. Even though I said I would have my tablets when I got back the nurse was quite insistent that she give me what they had on the ward despite me saying that I would be having my chemo attached when I got back anyway just in case she thought I don’t know, she thought they may get overlooked.

When she got back she said that they didn’t have everything (what a surprise there) and said that she’d marked them with a 5, presumably from the written drug chart coding, and went through the items. The first one she got to was a tablet (co-trimoxazole) that’s only given on Mondays, Wednesdays and Fridays and which is clearly, well in my opinion, marked with a shaded box (rather than a blank one) on any day not a Monday, Wednesday or Friday in the 14 day date range shown. I said ‘I only take that on Mondays, Wednesdays and Fridays anyway.’ She didn’t comment and moved on. Fair do’s she mentioned the mouth ways which says bed time as she wouldn’t know that this is entrusted to the patient’s initiative. And it’s not like I fully expected them to have Thalidomide to hand but let’s take a little shufty at the three different tablets I did get.

Sodium Bicarbonate – 1000mg of 500mg tablets – so in my book that’s two – I got one

Calcichew – 2000mg of 500mg tablets – I get that to four – I got two

Omeprazole – 20mg – yay we have a winner!

I drank some of the water out of the glass and as it was getting late, I was getting tired and I didn’t have a pencil/pen to note down the differences I put the tablets in my bag pocket.

I had to fend off an attempt to get the haematology ward to bring the missing tablets down, and not just because I was being considerate to the night staff (two nurses and a health care assistant to up to 19 patients) who really didn’t need to be traipsing across the hospital including down lifts and up lifts, with meds when it could easily wait but also because it would have resulted in potentially greater confusion. She wasn’t letting up but I just kept saying I’d have them later. She informed me I would have missed the drug round at 10 o’clock. I didn’t say that just because it says 10 (well actually 22:00) on the sheet didn’t mean it had to be given at that exact time to every patient. I said again that the chemo would be going up when I got back and I’d have a chance to ask about painkillers and anti-nausea just in case she thought I might need a prompt to ask for pills. She left still a little put out about the situation and I thought ‘If she comes back I’ll give her some flannel about Thalidomide being a controlled substance, blah, blah.’ I mean thinking about it the nurses do use gloves to pop them out to avoid direct contact due to the whole birth defects issue so I need to bear that in mind for future reference – although hopefully I won’t have another night that late.

When I got back to the ward the nurse asked if I’d got a note of what I’d been given as the dialysis nurses had obviously rang down to say that I’d had some but not all my tablets. I explained in a few short words that I not taken anything she’d given me as that seemed the easiest course of action as she’d messed (or a word to that effect – it was LATE) them up – so we started again.

Other than that everything’s fine. I’ve only been sick once – yesterday just as I opened the bag containing the Chinese takeaway that B had collected. I hadn’t even seen the food. Fortunately I’d picked a couple of sick bowls up earlier when I started feeling not nauseous but a bit odd.

And I mean it’s not like the electrical sockets were off for long after one of the nurses attempted to accommodate me unplugging one of my two drips, and putting up with it beeping to be reconnected as it had less than 26 minutes of battery time remaining, as I wanted to have power to my netbook by finding an extension cable that didn’t agree with the socket! The engineer had it sorted in minutes!

Steak and Kidneys

‘How am I?’ Well, thank you for asking. I am just assuming some of you, or perhaps one or two, have been wondering how I’ve been getting on healthwise generally.

In myself I have been so tired and a bit out of sorts. I think It has to do with getting up before six am three days a week and then sleeping later on the other days, along with having a nap in the afternoon following dialysis. From being young one of the things that was guaranteed to make me feel under the weather was irregular sleeping hours – so I think I’m going to have to start getting up early on the days I don’t go and get into a routine time of going to bed. Plus it doesn’t help when B’s brother rings at 20 past 11 on a Friday night to ask if B can pick their mum’s prescription up from the doctors before 11 on Saturday morning because he’s busy. Busy turning out to mean he’s had, or about to have, so much to drink he won’t be able to legally drive on the Saturday morning. Monday I got home and slept most of the afternoon – well afternoon and early evening – it was about seven when I prised myself off the settee to go for a shower and get my jim jams on. This morning I managed to get a sleep while on dialysis and I have to say I feel a lot better for it. Yesterday armchair yoga started again and I decided not to go – well I um’ed and ah’ed and then with B leaning towards me not going I was swayed in that direction. However it was the right decision as by early evening I said ‘If I’d felt like this earlier I would have gone’ just proving I guess that I wasn’t really up to it.

Mind you I didn’t just sleep on Monday I was sick as well. I was so disappointed Friday night when we had an Indian takeaway. We’d had one last Monday when I found out my neutrophils had gone up to 2.00 – yes 2.00! I intially thought the nurse must have said 0.2 but no it was 2.00 – the bottom end of normal. On Monday I’d been fine with the takeaway – I hadn’t eaten it all, but some was eaten and it stayed eaten – however on Friday I was part way through when what had been eaten decided to put in a reappearance. Fortunately since the ambulance incident a poop scoop bag lined sick bowl is never far out of reach – it could be the newest ‘must have’ fashion accessory – maybe I could make it a little cover.

B’s still been doing most of the cooking and after slaving over a hot stove on Monday night I ate a little bit of lamb, potatoes, petit pois (not just ordinary garden peas for us I’ll have you know) and mint gravy and then this too decided to do an encore performance. My Auntie Ann pointed out last night that it might be dialysis linked as I wasn’t sick on Thursday, Saturday or Sunday – see if I wasn’t so tired I could have worked that out for myself. I wasn’t sick yesterday either – although it was a close thing after a few gulps of Fortisip in the morning but it settled down and the Fortisip was actually okay.

I asked this morning whether the sickness had anything to do with the dialysis and the short answer is no. It can make people sick but this tends to be straight after – so last Wednesday’s incident would tie in but nothing later in the day so that rules out Friday and Monday’s later incidents. However the sister who has been dealing with me had mentioned to one of the renal doctors that my blood pressure was high and this can cause vomiting. The doctor had suggested that more fluid was taken off but the sister pointed out that this wasn’t an issue so one of the blood doctors was going to come and see me this morning but I finished dialysis really early today as there was a clotting issue which despite the best efforts of the sister completely stuffed the machine. The most common anti-clotting drug Heprin isn’t being used as my platelets have been low, and still are somewhat, but apparently there are other drugs or a different ‘kidney’ that can be used and it will be sorted for Friday. And today my blood pressure was fine.

Since I hadn’t/haven’t been eating as much as usual the renal dietician sent a note to our GP so I could get this fortified supplement drink on prescription. I had tried Nepro whilst in the Royal but it was a warm vanilla and let’s just say it put me off that one. I also had a different one in strawberry and that was okay – as long as it was cold that it is – but since I was on a fluid restriction at the time I didn’t want to use a third of it with one of those. I had it on good authority from one of the other dieticians that Fortisip is probably the most paletable and is only 125ml instead of 250ml. Although at the moment I can drink up to two litres a day as long as I don’t gain more than 2 kg (4.4 lbs) between dialysis sessions. This isn’t proving to be a problem since I’ve lost nearly 10 kg (22 lbs) since November but have been hovering about the same weight for the last couple of weeks.

One of the renal dieticians called in to see me this morning and said if my appetite doesn’t improve in the next few weeks we can increase the Fortisip to two a day and in the meantime I should ‘enrich’ my food ie, add butter, cheese, cream to everything. I had started doing this after B got me some crackers on Monday and I had a few with butter yesterday which really got Buddy’s attention. I had anticipated doing this on Monday night but ‘someone’ put the butter back in the fridge after I’d got it out to soften so the butter didn’t spread very far but the crackers ended up in a lot of pieces.

The ‘rash’ I had that came in two stages stopped being painful when pressed but still hasn’t faded completely. These were the spots that came up looking like small ‘bites’ and then settled into a red looking bruise with a hard bit in the middle. The most dramatic one seeming to conincide with my platelets being really low and ending up being about three inches in diameter.

My knees are still a bit iffy in the stair department. They’re not painful and I can actually get up from a squat position without scrabbling towards something I can pull myself up on, not that I’ve been making a habit of squating, but I’m still really, really slow in going up the stairs. Oh, and I traumatised one of the ambulance drivers yesterday as I fell onto the mini bus. B had phoned just as we were walking out of the main doors and I attempted to take the two small steps onto the bus with my crocheting in one hand and the phone clamped to my ear in the other. My knee just didn’t produce any umpff – at all. I lunged forward and fortunately landed on a nearby seat which doubly fortunately was down on this occassion. He advised me to be careful getting off. The other ambulance man asked ‘Why? Did you fall getting off before?’ ‘No’ the first one replied ‘she fell getting ON!’

I must have lost a little bit of weight with my hair – since it’s been a bit of a competition as to who was shedding more – me or Bud. And it’s really cold. I keep feeling draughts on my head. I’ll be lying on the settee minding my own beeswax and B will go out opening the door, cold blast one, and closing the door, cold blast two. I was thinking ‘I don’t remember it being this chilly before’ and of course it wasn’t because last time I had a similar hair style it was summer. After having the hood up on my shorty dressing gown on Monday night I decided that I needed something to keep my noggin toasty while I’m dressed. B offered to find me a new bob hat that he has for work but I dug out a protype hat I knit a while ago so I spent yesterday afternoon with black and lilac stripped Peruvian style head wear with little plaits from the ear flaps and a tassel on the top.

B cooked us peppered rump steak for tea – a bit adventurous possibly as I’d thrown up twice within the past two hours as a result I think of an uncustomary can of coca cola – and it was gorgeous more so going down than coming back up I must admit. Although so far the second instalment has stayed where it was put.

Happy New Year

Happy 2012! I have to admit I’m not a big fan of New Year’s Eve. I looooooove Christmas and for me New Year pales in comparison. However something this year made me think of the traditions that use to happen when I was younger. We would all go to my Great Auntie Betty’s for Christmas Day and then New Year’s Eve, but New Year would include more friends and neighbours. Just before midnight the men, with me tagging along, would go out the back gate, down the entry (alleyway) and round to the front door. At 12 someone would knock, the door was opened and the New Year let in. This was always done by a man and preferably one with dark hair – Auntie Bet was made up with B for this reason. I don’t remember any of the other traditions actually being carried out but I do remember people talking about things they use to do such as carrying coal, bread, to ensure there was heat and food for the coming year. At our current house I suppose I couldn’t expect B to go out the back door and round the front on his own, let alone carrying stuff, since it would involve several six foot fences.

Anyhoo, back to this year. The three of us spent New Year’s Eve quietly at home. Last year we went to one of our neighbour’s but his lady friend has shingles so I had to steer clear. We went to Auntie Ann’s on New Year’s Day when she cooked a fantastic roast. I ate everyting on my plate (about half/two thirds what I’d usually eat) much to B’s amazement and also causing him to exclaim ‘How come you ate all that but don’t eat all your tea?’ A friend said I should have pointed out that it was three o’clock in the afternoon and not half past nine at night! Bud got his own roast dinner too.

And you won’t believe what happened yesterday. Or maybe you will because I do tend to be slightly accident prone as evidenced last week by me knocking over two full 500ml (roughly a pint) glasses of drink within three days prompting B to ask if I was going to continue at this rate.

Anyhoo, back to yesterday. I’ve been going for dialysis on a Monday, Wednesday and Friday at seven am. B took me Boxing Day and the Wednesday of that week as there wasn’t transport available. Friday I got picked up by a mini bus type ambulance at 6.25am, Monday it was 6.10am and it turned out I needed to be ready not for 6.30 but for 6.00 as arrival time depended on who else they were picking up from where. On Wednesday I was picked up at about 6.20am and everything went fine, I felt quite good, I watched a couple of films and did some crocheting. Then when we were finished I started getting flashing light type things in my eyes suggestive of a migraine so more than anything I just wanted to get home. I managed to get down to the ‘Hospitality Suite’ without incident even though things weren’t too clear. I think you have had to experience these visual disturbances to understand completely, you can still see but not properly – it’s so weird. As it happened the driver was at the desk when I got there so there was no wait. I got on the mini bus and sat as far back as I could so I wasn’t near any bacteria I didn’t know, er I mean people I didn’t know. Altogether there was five of us being transported and I was dropped off first.

This is where it gets a bit gross so anyone with a delicate stomach may want to look away.

My sight went back to normal and fortunately no headache actually materialised. BUT I suddenly realised I felt sick. Now we know that for me ‘I feel sick’ means ‘Pass me a sick bowl immediately because I’m about to make a deposit’. BUT it was okay because I had a poop scoop bag in my pocket just in case of this eventuality. I fished it out and whilst juggling the netbook bag and large bag of crocheting/yarn I threw up. Now I thought that it had all gone either in the poop bag, in the crocheting bag or down the front of my coat so I didn’t even contemplate letting the driver know. It would appear though with the benefit of hindsight that I was wrong. I just relievedly got off the mini bus and flopped into the house, where B took my coat, hat, gloves and scarf and threw them in the washing machine whilst I went for a wash.

However it turned out that the bottom of the paper/board bag I had my crocheting in was er, we’ll go with moist, meaning that some of the vomit must have hit the floor! And I got off without saying ANYTHING AT ALL!!!!! Every time the phone rang today I thought it was going to be Hospital Transport telling me I’d been black balled. B said ‘Why didn’t you just tell the driver?’ to which I responded ‘Because I didn’t even look at the floor!’

Plus with my nature of coming clean with everything I need to explain/apologise for it to someone. Maybe I should start with the girl who sits in the other back seat ‘cos she probably got an eyeful after I’d got off. Ugh – I don’t think there’s much worse than other people’s sick. Usually I hate being sick in front of people, particularly those I don’t know, and at one point in the Royal I spilt bloody (my mouth was bleeding a fair bit) vomit on my bed sheet as I sat up in an attempt to avoid the ‘Hostess’ (catering lady) seeing the bowl of sick. So it’s not a sight I would usually force on anyone.

As it turned out I did feel decidely off for the rest of the day, slept most of the afternoon, was sick again just after I’d had a bath and barely ate any tea but I feel much better today, apart from the guilt.

So, hopefully, I’ll get picked up tomorrow morning and I really hope it’s the same driver so that I can get things off my chest first as last. I mean I’ve only been picked up three times and have already managed to make a mess.