Peter’s Hospital Diary

Back home again after the check up in London. I’m delighted to report that blood chemistry is slowly getting back to normal – haemoglobin is creeping up (just under 10) and the enzymes that were giving concern about my liver and kidney function are slowly reducing, and the Cyclosporin levels seem to be OK – so all in all, progress is being maintained!

London itself was OK – we are lucky to have use of a flat, which made the logistics a lot easier as I have been advised not to drive just yet, and not to use public transport – so my role was as navigator for Felicity! We didn’t get lost!

Next check up is on Thursday – so onwards and upwards in the hope that progress will continue! I am feeling a little tired after the trip up, so I’ll write more tomorrrow!

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I woke up this morning (after another lovely night of deep sleep!) to an unusual sound – rain! I dont think it rained at all while I was in hospital, or maybe the double glazing in the room was so efficient that I didn’t ntice! Fortunately it stopped in time for Tom & Mike to carry on with the ground work for the conservatory – the footings are now in place!

We are off to London later this afternoon, to stay in our friend’s flat ready for the outpatient appointment tomorrow. This will be to establish the levels of Cyclosporin in my blood and to make adjustments to the dose as required. I expect the usual armful of blood will be taken, but as I still have the Hickman line in place, this isn’t a big deal!

We expect to be back late tomorrow evening, when I will make the next post.

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Phew its good to be home, although as I woke from a deep sleep this morning, I did wonder where I was – because coming in from outside was the noise of a concrete breaker! Was it a dream? No – it was the ongoing work by Tom & Mike in preparation for the conservatory we are having built on the back of the kitchen; but I had to smile after my comments about the hospital car park work!

But I digress… I finally got away at just before 1 yesterday afternoon. Needless to say I was packed well before then so I was ready and rareing to go. I dozed most of the way back, and was home about 2 hours later. It was sooooo nice to be back – my own things, peace and quiet, and above all, good food!

It is a cold frosty morning here in Hampshire – the temperature is hovering around freezing point – but so what – it is lovely and warm inside!

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Fittingly, it is another crystal clear day over St Pauls, but today is the day… 30 days after admission I am on my way out! It was a bit touch and go, because although the ultrasound showed nothing apparently wrong with my liver, there is still a marker showing up in the blood chemistry which is causing concern, so I have to return on Monday to the day unit to check Cyclosporin levels and to see if the marker is still there. But it will be so nice to spend the weekend at home, sleeping in my own bed, and no observations.

Now is the time to thank all those who have looked after and supported me in the last month. It is always dangerous to mention names, because there will be some I will miss, out, but on the nursing side there is Liz, the ward manager and her team, including Nicky, Sinead, Aili, Ellen, Grace, Johanna, Tom, Louise, Gary, Mick, Steve, Tom, Michelle, Raj, Clemmy, Thelma, Eric, and many more who were just shadowy figures doing the observations at night.

The nurse specialists, Viki, Liz and Karen; Rachel, the dietician, who took up the food battle; the unsung heroes on the cleaning staff..

The medical staff, including the transplant team, Drs Kazmi, Smith and Yeung, and their team of registrars and house officers, including Sala, Sally, Shabeena, Alice and several others whose name I didn’t catch, and of course Robert, in whose care I have been for the last 7 years since I was first diagnosed.

And then there are all of you who have visited me, or read the blog and commented or sent me emails of support – it really has made a difference! And last but not least, my parents and family who have visited and supported me in the darker moments. (Yes, there were some).

The blog will continue, although perhaps not so frequently. I will probably start a category on ‘Post Hospital’ and update as and when required – it has been great fun writing it – I hope reading it has been equally good. Interestingly the statistics indicate over 150 individuals reading it (based on IP addresses) And thanks to Mark for hosting it – I will move it onto my own server in the near future, but I’ll post when that happens.

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It looks a gin clear day outside – not a cloud in the sky, and the sun shining strongly, but it also looks very cold – even the temperature in my room has dropped – to just over 25C!

I’m feeling good this morning; we have had the usual start to the day, Obs, bloods etc. Breakfast was hot when it arrived, and all the indications are that tomorrow will be the day. There is still a little concern over liver function, one of the blood markers is abnormal, but the other one is OK, so I am drafting this while I am waiting for a porter to take me down to ultrasound for a quick examination.

I think the deciding factor on whether I go home or not will be how my Cyclosporin levels are falling off – definitely a question for the ward round!

I still can’t quite believe that it is over a month since I was admitted – I feel more than ready to go!

…Just returned from the ultrasound on my liver – all looking normal, so another tick in the box!

Yesterday afternoon passed quietly – I went back to the chair outside the room to sit in the sun and read a book. I had a reduced does of IV Cyclosporin, part of the weaning process! I had one visitor in the evening, a friend from Bristol who happened to be in London working, and then a reasonably early night, and another good night’s sleep. The 2 o’clock Obs seem to have been dropped, so apart from getting up to get rid of excess liquid, I slept really well

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Now it really is a month since I was admitted – and escape is on the horizon! Even the weather has turned and the sun was gleaming brightly on St Paul’s when I awoke this morning!

I had another good nigh’s sleep, and gentle awakening with the Obs, blood, followed by breakfast – which finally has the right ingredients – bacon and tomatoes!

I was heartened to get a visit by two first year medical students who wanted to learn about the ‘hospital experience’ from a patient perspective. I hope you got what you wanted! This is a far cry from when I was a student, sharing with medical students whose first exposure to patients was during the first clinical year – 3 years after starting the degree course!

I feel ready to go home, but I am still being weaned off the Cyclosporin in favour of the Mycophenolate Mofetil (MMF) which will take about another 48 hours. So provided nothing else untoward (like an infection) occurs, I hope to be out of here on Friday! I feel very tiggerish!

Felicity went home yesterday afternoon, after spending the morning with me, but she was followed by a visit from Stuart, my next door neighbour from home, who is working in London for a while. After he left, I settled down with a book until 9 o’clock, when I watched the next in the series about complementary medicines on BBC2. Last night was all about herbal medicines, which was fascinating!

So, without wishing to get my hopes up too high, 48 hours and counting!

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Well, I am still in my little room, and champing at the bit to go home – I feel ready to go now but I am resigned to a few more days yet! It is, incredibly, 27 days since I was admitted; tomorrow will be the start of the 5th week! The time has flown by!

This morning is yet again grey, with a westerly wind and a sky with little flecks of blue in it!

I had a good nights sleep – really deep at times! The cooked breakfast didn’t tun up at all this morning, which was a pity as I was almost looking forward to it – but then perhaps in a few days time I’ll be able to cook my own!

No sign of the ward round yet, although I have seen Sheeba, (house officer) who explained the reasons why I have temporarily changed immuno-suppressive drugs. I read the patient leaflet note for the alternative which explained that it is normally given to prevent rejection in heart, liver and kidney transplants. Reading that brings home the fact that it really is a transplant that I have had. It might not be as dramatic as a surgical transplant, but the consequences and side effects could be just as dramatic.

Yesterday afternoon passed pleasantly with a book, and then Felicity arrived in the late afternoon. She was closely followed by Elspeth (LeukaemiaCare) who stayed for about 45 minutes. Felicity stayed most of the evening before going back to our friends’ flat. She will be coming in again this morning.

Everything bodywise seems to be settling down. There is still a need to balance cyclosporin levels so that I can return to the oral preparation (which has been suspended in favour of this other drug) but the spike impaired kidney function seems to have gone. There is still a small spike in liver function, but I hope that today’s blood results will show that that is returning to normal.

Mark, my fellow patient, was in yesterday. He is now a day patient (he lives close enough to return if things go awry) – but I don’t intend to be far behind him!

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Just heard that I am moving rooms to make way for someone with greater clinical need for the facilities. The new room does not have a telephone… I will try to continue to post, but it may be difficult.

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Having got over the initial disappointement that this is another Monday here, when I expected to be at home, I feel remarkably good Outside looks grey, but the wind has changed direction from last week – judging by the standard flying on Southark Cathedral.

Last night’s sleep was again fitful, but less disturbed than the night before. My fluid balance is looking good, the achy feelings have gone, my weight is pretty near that on admission, and, best of all, I feel good!

I have faced up to the cooked breakfast (or elements of it) and won, and the ward round has just concluded. The upshot is that there is still a little concern at getting the Cyclosporin levels stabilised and in my kidney function, so I will be having an IV Cyclosporin dose this morning. However the antibiotics have stopped, which should help settle my gut. This means that gut uptake from the oral tablets should get more predictable. So perhaps by the end of the week…

Talking of gut, I have been introduced to the ‘Bristol Stool Chart’? (Few aspects of hospital life will go undocumented) To avoid doubt, we are not talking about stools of the three-legged or bar variety. Apart from the fact that I have to record frequency, colour, and description, I shall draw the subject to a close – I have probably already given far too much information!

Having read back over the weekend (and thank you for the comments) I probably was a little ‘down’ but today is another day! Onwards and upwards!

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I’m writing this a bit later today, partly because Sundays are a bit quiet and there wasn’t much new to write about this morning, and partly to try and ‘break the mould’! You also had the second post yesterday about the delay in letting me out. I must admit to bing a bit crestfallen at the news, but feel OK about it today (just as well, nothing much I can do about it!)

Just to inject some amusement I have taken a couple of photos, which Mark (blogmaster) has reduced to a size suitable for this entry (I don’t have any photo-editing software with me). They are not works of art, but we had some fun taking them – I hate posing for photos – I won’t post any of the earlier ones! I hope it will reassure you that it is the right Peter whose blog you are following.

At least the weather has changed and it was a sunny St Pauls greeted me this morning, after a fitful night’s sleep. The main cause of this was the intravenous drip of saline and the consequential effects. I also felt very ‘fluey’ on waking up, aching joints, but these have eased during the day.

Breakfast was much as yesterday – the Calcium tablets have the finger pointed at them and although I nibbled two very carefully last night without ill effect, I have been very circumspect about them today!

To my surprise, the Cyclosporin was given orally this morning (and I had none last night) but that was a also a surprise to the Registrar n the ward round. He explained that the change back to IV was because of some of the other symptoms (which I won’t dwell on!!) which made uptake from the gut unreliable at the moment. My levels were OK yesterday, but perhaps now that the gastric problems are passing, I might stay on oral tablets. The main reason for keeping me here is to establish the correct dose: too high, risk of kidney damage too low, risk of GvH; so it is important to get it right!

My parents arrived to visit early in the afternoon, bringing with them a real home cooked food – a lemon drizzle cake – so we had ‘Afternoon Tea’ just before they left! (And you get to see my father’s talent with a camera)

I suppose I can’t really close without mentioning the food! Lunch was fish pie, looked OK, but the smell… and dinner which cottage pie and was quite tasty!

And finally, my fellow patient Mark’s count came up spectacularly and he went home for the weekend! (But will be back Monday) Don’t close off that tunnel, Mark, I’ll be right behind you!

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