The end of the story?

I have hesitated to write another blog post because (shhhhh, don’t jinx it) everything has improved hugely.

I’m not sure why. Is it just a minor medical improvement after the removal of the kidney stone and huge mental relief not to have the operation/fight for getting it done hanging over me? Or has the stone, infections and continual antibiotics been the source of most of my health problems?

I am now running round like a dervish, trying to catch up with all the things I haven’t done during three years of exhaustion. I had booked some annual leave which came at just the right time, but it is going to take a while before the house and garden look anything like normal!

I had an outpatient appointment with Urology this week and was discharged. The tiny stone is still there but until it starts giving problems there’s not a lot they can do – and there is a possibility that it won’t cause problems, so why go looking for trouble?

And, to show some things never change, my annual coeliac appointment, which had already been cancelled once with three hours notice, was cancelled again this week.

 

Well, that was an experience… (Part One – Gluten Free hospital food)

Hello!  I am alive, not in too much pain and if this anaesthetic hangover would push off the world would be a better place, but you can’t have everything.

As this was started as a gluten free blog, I’ll post first about being coeliac in hospital.  I have to admit that I had visions of living on fruit and jacket potatoes but this was not how it turned out to be.  There was a wide choice of meals on offer for lunch and evening meals.  I was brought a special menu without any prompting and my order was rung through to the catering dept and arrived hot and on time.  At one point I was given a red ID wrist band (and ankle band, just in case I lost a limb?) which possibly meant beware, oddball.  The anaesthetist picked up on the note and misread the nurse’s writing and asked me whether I was allergic to codeine…

On Tuesday I was still recovering from the anaesthetic (I’ll leave out details in case you are of a sensitive nature, but food and I were not friends, in fact water and I didn’t even want to shake hands…) so, despite having a chicken casserole in front of me with ratatouille veg and boiled potatoes, I didn’t manage to eat any of it.  I did poke the potatoes with a fork and them seemed sort of sticky.

The meals were made by Wiltshire Farm Foods.  I have seen these advertised on the TV, with a warm smiling Ronnie Corbett encouraging middle-aged ladies to order them for their infirm incapable parents – another boost for my ego!   They are presented with their lids still sealed on the black plastic trays, which I guess makes cross-contamination impossible but the presentation loses a certain something along the way.

Wednesday morning brought breakfast.  A big trolley with various cereals, bread (which was not allowed to be toasted as someone kept setting the smoke alarms off and the fire service had decided to start charging for their wasted time, apparently!), coffee and juice.  I was told that I was ‘lucky’ as they had had another coeliac patient recently so I was able to have Sainsbury’s FreeFrom Cornflakes.  I had to persuade the housekeeping lady that I did not need soya milk, no, not in my coffee either.

Then came The Toast Conversation… She said they didn’t have GF bread so that wasn’t an option, but as she’d heard it was all pretty disgusting then I probably wasn’t missing much.  She mentioned that she’d heard it was better toasted – I agreed, but said that that would just make life even more difficult for them:

HK:  ‘It wouldn’t be a problem, we have adjustable slots in our toasters’

I explained about the need to avoid cross-contamination and mentioned having to have separate toasters/toaster bags at home.

HK: ‘We’ve never been told to do that, we put the GF bread in the same toaster as all the other bread.’

Fair play to this lady, she was following instructions and she went off and queried it with her manager and reported back at mid-morning coffee time.  The manager had never heard of avoiding cross-contamination in this way, but queried it with the dietitians who confirmed that they should indeed be doing this!  I wonder how many coeliacs that has affected in the past?  I was armed with toaster bags and many coeliacs would be wary of toast that they didn’t see prepared but…

Lunch on Wednesday was Shepherd’s Pie and veg and I was on the ball enough by then to take a photo:

It doesn’t look quite as appetising as it does when you see it on the website, does it!

This was the packaging and you can reassuringly see that it is labelled Gluten Free, which is the most important part:

 

Which bring us to pudding.  I had ordered Rice Pudding but that was not available, so they brought me a replacement – chocolate and vanilla sponge.  Alarm bells rang – sponge? flour? gluten free?  In between shovelling the shepherd’s pie into my mouth I asked ‘Are you sure that’s gluten free?’ and was assured that they had checked with the kitchen and it was fine.

I stared at the packaging:

 

The ingredient list was too smudged to read, but it was the same style as the shepherd’s pie and did not say Gluten Free amongst the list on the coloured bars.  I asked another member of staff if they could confirm that it was gluten free, she checked with someone else who offered to ring the kitchen and check.  I didn’t want to cause a fuss, they had enough to do juggling meals and patients already and said it was fine, as there was a doubt I wouldn’t eat it, really it’s not a problem – they insisted on ringing and guess what?  It was not gluten free…

Here’s the list of ingredients from the Wiltshire Farm Foods website:

water, sugar, chocolate chips (5%) [sugar, cocoa mass, cocoa butter, vegetable fat (palm, shea, sal, illpe, kokum, mango kernel in varying proportions), emulsifier (E322 (contains SOYA))], WHEAT flour (with calcium, iron, niacin, thiamin), modified potato starch, MILK proteins, dried whole MILK, vegetable oil (rapeseed, palm), maltodextrin, cocoa powder, dried EGG powder, natural vanilla flavouring substances, raising agents (E450i, E500ii), salt, Allergy Advice: For allergens see ingredients in CAPITALS

I didn’t order an evening meal as I took a turn for the worse and ended up having to stay an extra night in hospital.  Breakfast the next morning was uneventful (and I might have squeezed another day’s serving out of the cornflakes if I had had to!).  I was sent to the discharge lounge mid-morning on Thursday and collected early in the afternoon.  I had coffee and had my emergency supply of fruit and crisps so didn’t starve to death, but there didn’t seem to be any alternative to the sandwiches that were on offer.

Overall – nice try, but could do a lot better.  When I have a bit more energy I will be contacting the hospital to see what they can do to prevent future coeliac patients going through the same palaver!

 

 

 

Here we go….

Hopefully, tomorrow is operation day.  Goodbye to my kidney stones and hello to a new me?  Well, I’ll only believe it’s happened when I come round from the anaesthetic and am told that it went successfully…  Then I can worry about getting gluten free food as an inpatient.

Oh, and I still don’t have a prescription pre-payment card, the chap on the helpline described my branch of Boots as providing no service, being poor at their job and just plain lazy 🙂

 

Give me more strength!

So much to rant about, so little time…

As I keep being given prescribed drugs regularly I have been buying a pre-payment card. Normally a prescribed item costs about £8, the card is about £30 and covers you for everything for three months – so an antibiotic a month, some Vit D tablets and sleeping tablets and I’ve got the best deal.

I keep optimistically thinking that I won’t need another card! Surely all this tablet taking must come to an end soon? The last one ran out near the end of May, and within days I needed more antibiotics, so off I went to buy one. They are only available at certain pharmacies, so, as I was going into town anyway, I decided to buy it from Boots. A big pharmacy company, you’d imagine that they do this sort of thing all the time.

The lady in the till looked fairly mystified, but did find a form for me. She didn’t know how to put it through the till, neither did the pharmacist, so I had to wait until her colleague came back from her break. Eventually it was all sorted, I had my receipt and I could hear them discussing what to do with my form.

Two weeks later and I still haven’t got my card – in the past it has always arrived a few days after it was ordered. I rang the NHS prescription card service who said that they hadn’t received anything from Boots. I rang Boots, who did not know what had happened to it – I was told there were ‘none on the pin board waiting to be sent off’. They would investigate and someone would ring me the next day. No-one rang.

Today I had another prescription for antibiotics. Off to Boots I go, clutching my receipt for the card. I explain the situation, the assistant went off and I could hear discussions in the background. No problem, I could have the prescription without further charge, my form has been sent off. I asked when – yesterday! In that case they must have found it somewhere but not rung me to let me know. Apparently the reasons was that they ‘did not have any envelopes to send it off and had to get some from another branch’.

I hope the card actually arrives this time!

 

Give me strength…

Bit quiet here for a while…

I have been off work for a few weeks, same problem as before, so tired, run down, making mistakes, worrying about making more mistakes/not spotting a vital error.

Back to work this week and then pre-op number two today. If you missed the beginning of the saga, my 3cm kidney stone was meant to be removed at my local hospital fifteen minutes drive away, but as a member of the radiology team has hurt their back it is now being done at another hospital (within the same Trust) but almost an hour’s drive away. I was pre-opped at my local hospital in case a replacement member of staff miraculously appeared, but then it became apparent this wasn’t going to happen.

So, despite the fact that they are in the same Trust, the two hospitals have different procedures and everything has to be done a second time. When I found the department there was no reception as such, just a grumpy looking woman in an office who grudgingly confirmed that I was in the right place. Ms Grumpy then came into the waiting area and took my forms and urine sample – very discreet waving it about in front of everyone else (we all got a turn at this, interesting to compare the containers that other people were using! I got weighed and measured by a fancy electronic machine, then taken into the office where there were other staff to have my personal details taken and blood pressure measure by Ms Grumpy. I got a handout which explained that although I would need to be at the hospital at 7:30 am, I wasn’t to think that I was going to be operated upon that morning. It might be much later in the day, they just like to have everyone there so they decide on the day who goes in when. That’s nice for all us patients who have to starve from midnight, isn’t it?

Back to the waiting room.

Then, the nurse… ‘So you’re having a per-que-tain-eeee… No idea what that is’ ‘why are you here not at your local hospital?’ ‘Oh I don’t think they need a radiologist for this op’. So many gems came from her mouth. The best bit was when she wrote ‘no wheat’ on my form when I said I was coeliac. I pointed out it wasn’t wheat, it was gluten that was the problem. She couldn’t compute that gluten is in wheat AND it is barley and rye and spelt.

I asked how long I might be staying in hospital – bearing in mind I had been told 3/4 days at the clinic. ‘Oh, look the computer says you will be in until 1 July, that’s a week! But I don’t believe that, probably a day or two’.

I asked about blood tests – at the last pre-op I had bloods done on the day and then an envelope to take away and have done in the five days running up to the op. I wanted to know if the blood test near the time of the op needed to be done at the not-local hospital. ‘Oh, no, it should be fine to have them done at your GP surgery/local hospital, the results are all linked as we are the same Trust, I expect…’

Back to the waiting room.

Then a real treat, a junior doctor. At all the other appts I have been to I have deliberately worn a strappy top so my heart can be listened to etc. Not today, because I had been through this once and knew they didn’t do that sort of thing. WRONG. Such fun, sitting in your bra whilst a chap half your age puts his stethoscope all over you :(. He filled in the forms for today’s blood tests and then gave me another one for the test nearer the op date. I asked if it could be done at my local hospital. Thankfully he rang through to path lab – no it can’t! So I have to drive for an hour and a half and pay to park for a blood test which will take about two minutes to do. Dr Junior thought I’d be in hospital for one night.

At least I was given the go-ahead for the operation, despite my surprisingly high blood pressure! And I am firm in the knowledge that I will be in hospital for between 1 and 7 nights. Probably!

 

I have a new PAL

I decided to approach the local hospital’s Patient Advice and Liaison Service to see if they could get any sort of sense out of the hospital system, as I have been failing to do so for quite a while now.  If in doubt, do try them, they seem to have the power to move things along nicely…

I emailed on Tuesday, they acknowledged my email the same day and on Friday afternoon I had a response explaining about the radiologist’s absence and adding more info.  My op is now to be at a different hospital in the same trust, where another radiologist is managing to fit in a few extra sessions to try and clear the backlog. Apparently there are 13 other people waiting – which, as the last consultant I saw said he’d been with the hospital for four years and they had done about 25 of these ops, sounds like quite a lot to me!  I am the one who has been waiting longest.  I guess I look like a young healthy person so I can see why others would take priority, but that doesn’t help me (I feel like stamping my foot like a moody toddler…)!

However, it was still very vague!  I will be on the’ next available list’ and will get details ‘soon’ – I had no way of knowing if that means this month or next Christmas.  So, I sent another email yesterday morning asking for more details.  When I got home from work there was a letter on the mat giving me an operation date, and another pre-op.  The op is still six weeks away, but at least I have a date at last.

Yesterday afternoon the nurse who had done my pre-op three weeks ago rang me.  She wanted to tell me that the sample I provided showed another infection (well, that’s useful, telling me three weeks later??) but as I had already been to the surgery and have almost finished this round of antibiotics (nitrofurantoin again) that was a bit pointless.  She also had the same date for my op, but didn’t know it was going to be at a different hospital and when I told her the ward I had been told to report to, she said ‘oh, but that’s day surgery’.  She went and checked and confirmed that the details I had were correct and that the surgeon from the local hospital will still be doing my op, even though it is at a different hospital 20 miles away.  She said that I would still need to go for the extra pre-op and said that they would need my notes over there and she would organise that.  I did think about seeing if I could avoid a second pre-op, but it’s probably easier to go, see the layout of the other hospital and check out that they don’t have me down for day surgery – and write COELIAC all over their forms in the hope that I don’t starve whilst staying there…

 

 

All dressed up, with no place to go

Pre op has been completed – half an hour with a nurse filling in forms about medical history, pots of pee tested, height/weight/blood pressure done, a giant cotton bud shoved up my nose to swab for MRSA and some blood tests to round it all off.  I wonder how long this will remain valid? There’s no sign of an op date still, so I spent the morning chasing the hospital.

Admissions have no more news, despite all their sparky ‘let’s get you pre-opped’ of the other week. The urology co-ordinator has no news but said she’ll raise it at the next weekly meeting.

I then spoke to the 18 week rule person, who says that I have indeed breached the 18 week rule (yep, it’s now 30 weeks) but the rule says they have only have to get 95% of people treated within the 18 weeks. They are allowed more leeway on 5% of their patients if they are complicated cases and he feels that I am within that bracket. He didn’t seem happy that I was aware that the delay was due to a lack of a radiologist – I don’t think that would fit within the ‘complicated’ category!

I am not quite sure how I am a complicated case… Kidney stones are pretty common, even if mine are unusually large.  By the time I was referred to the hospital at the beginning of October last year I had already had an ultrasound and X Ray that showed there was a large stone and at the appointment in early December I was told I would need a PCNL.  I am getting rather cynical about the two scans now, I wonder if the second scan was done as more of a time killing move rather than due to clinical need…

I am getting more and more tired and run down, the anxiety thing has been circling for a while now making me doubt everything I do and wake up in the middle of the night running through all the mistakes I could have made. I had another ‘sob all over the GP’ appt yesterday and was told that solving my sleep problems would be a good start, so back on my old friend amitriptyline again.

I just need to ring the surgery to see if my UTI test on Wednesday means I need yet more antibiotics.

Not a happy bunny 😦

 

 

Pre Op, but it could be a very-Pre Op…

I have been given a pre-op date for next Wednesday!

I thought this might mean an op a couple of weeks later, but when I rang the hospital I was told that they are still trying to find a radiologist to enable them to do it and are just trying to get as prepared as possible…

Still, it’s one step nearer waving farewell to my kidney stones 🙂

 

Radiologists are off, dear…

This photo pretty much sums up how things are at the moment:

Even when I try I can’t quite get it together. Homemade coleslaw seemed like a good idea. This was edible but would have looked more like coleslaw if I had got the grater/slicer attachment the right way round!

I’m on yet another dose of antibiotics (Trimethoprim 200mg x 2 a day). I have been on tenterhooks waiting for a letter to pop through the door summoning me for my operation. On Friday I tried ringing the hospital to see what was going on, but the phones just rang and rang and rang.

This morning, after redialling continually for ten minutes, someone answered! I was put through to admissions and after lots of rustling of papers my admission card was found in a ‘special’ pile…

My op requires a radiologist and a surgeon. The radiologist has been off sick for a while so no operations have been booked in. At the moment they don’t know when a replacement will be available, so they cannot even hint at a date. Even when they get a date there might be others in greater clinical need so I might not be top of the list.

I can’t help thinking that the last consultant I saw must have been aware of all this and just took the easy way out by failing to mention it…

 

The inside view

I have been scanned again – prompt service this time, I rang for an appointment on a Tuesday and was booked in for the Saturday.  It was much less stressful second time around and being on a Saturday there were few people there so I was in and out quickly.  The contrast dye gives you a very odd sensation, I had been warned that I might experience a hot flush (no) or a metallic taste in my mouth (maybe, very briefly) and also the feeling that I had wet myself.  I’m not sure that it was exactly like that, but similar to sitting in a warm bowl of custard!

Last week I saw a different consultant, who basically said all the same things that had been said at my appointment four months ago.  I did get to see the images from the CAT scan which were quite cool, he ran through them on the screen which made it a bit like travelling through my body’s abdomen, a bit like one of those flick book drawings.  The CAT scan showed that as well as the whopping big stone I have another smaller one in the top of my left kidney now too.

The consultant gave some fairly graphic descriptions of the process (known as a ‘perc’, short for percutaneous nephrolithotomy or PCNL) and said the stones can either be hard as granite and they basically hammer and hoover it out, or they can be very soft – no way of knowing until they’re trying to remove it. If the stone is hard some of the little bits that are chipped off might go down my tubes so I enjoy the experience of passing a kidney stone, or a soft stone is possibly full of infection so I can run a fever and take even more antibiotics.

A TCI card (hospital-speak for To Come In) was duly completed, saying I need a general anaesthetic (sounds like a good plan!) and a consultant to operate.

My GP has had a reply from the haematology department about my continuing slightly low white blood cell count, which have been described as mild and clinically insignificant.

So, still waiting for a hospital date…