Peter’s Hospital Diary

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 night’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 fifficult.

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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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Just a quick update as the ward round has just visited. There is a bit of concern about my kidney function and cyclosporin levels, so I have had to go back to IV Cyclosporin. The main effect of this is that I am unlikely to be discharged before next week as I will need to be stable on oral drugs before I can go. Bit of a blow, but then worse things happen at sea, as we have just seen…

And a welcome visit by David!

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Guess what? The weather is just the same as yesterday, although the wind has picked up a bit.

I am a bit concerned that these daily posts are getting repetitive, but then there isn’t a lot that changes in my little world at the moment. On a lighter side, I must be getting institutionalised - yesterday I couldn’t remember what day of the week it was when I came to type in the title!

I felt rough this morning, a bit of “That was one pint too many last night� (I wish) feeling, but a paracetamol has sorted that out, and I think I have pinpointed the cause of yesterdays problems - the calcium tabs. These seem to have the effect of ‘fizzing up’ an empty stomach with the inevitable result. So this morning I have left those until much later.

Again forgoing the cooked breakfast I ventured down to the day room for some cereal. There is a strange protocol walking down the ward; not to linger and look ahead, especially where beds may not have the curtains round them, but the occupant is asleep. (Bit like commuters on the tube avoiding eye contact!) On a serious note, it does make me remember that however ill I might be feeling, there are many far worse.

Two visitors yesterday, Mike, from work (technically still my boss) called in and we had a chat and a catch up for an hour or so, to be followed by Joyce, an old friend from post-university days. It has been a while since we last saw each other so time flew by. She kindly brought me a book (Thank you Joyce) “Does Anything Eat Wasps� - a selection of Q&A taken from “New Scientist� magazine. I’m not going to write a book review, but it is brilliant - almost unputdownable!

There was another ward round in the afternoon. My Cyclosporin levels are OK but I am still a little dehydrated, so I had a saline drip up until 2 this morning (which doesn’t help a good nights sleep). Current release date is still looking like Monday/Tuesday.

And although I rarely watch day time TV, there is a cookery programme on this morning, where the food looks appetising - even some steamed fish - so if I can watch that OK, I must be on the mend!

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It’s another cold morning here in London, not a breath of wind, and the prospect of some snow later!

I went to bed last night feeling slightly off colour, and only slept fitfully last night, but this morning I felt a lot better. I have now decided to eschew the cooked breakfasts in favour of the cereal-and-milk variety. Much safer, or so I thought. Having had a bowl of cereal, and a cup of tea in the day room with my fellow transplant patient (Jean) we were summoned back to our rooms for the ward round. (We did suggest that they might like to come to us… )

All was well until I started to walk, then the contents of my stomach started to intermix - with unpleasant results. Part of the problem may have been the 2 cups of cold water I had drunk to wash down the drugs 10 minutes before. Lesson learned! (Don’t eat Rice Krispies!)

Onto more pleasant things… The ward round went well. The Friday morning round is usually a big one, with a consultant (Matthew) and the two House officers). Overall they are pleased with the progress, and if all continues to go well, there is the possibility of release on Monday or Tuesday. The cause of the infection has been found, and they want to make sure that it is cleared up and that I am properly hydrated before letting me loose on the streets.

Yesterday afternoon started with quite a good lunch (in fact I began to feel guilty about some of my comments, although after this morning…!) and as the antibiotics did their job I started to feel less lethargic. There was a ward round in the afternoon and we discussed some of the blood results - one of tests shows a higher than normal level of broken cells, though this is not uncommon if you have had a splenectomy). My haemoglobin levels were still quite low so I had two units of blood infused, and a litre of fluids with potassium to correct my electrolyte balance. (The noise of the pump doesn’t make for a peaceful night!)

I had a welcome visit from Greg (my former section head when I was working in Bristol). We had a long chatted for about 90 minutes until he had to go for a meeting.

I finally got round to writing some words for a patient information booklet that Guy’s is producing for transplant patients. This is to advise transplant patient what they might need to bring with them on admission.

Have to smile - as I sit here typing, the man who runs the paper trolley has just popped in with my daily paper, could life get any better?

Yes it could! Kim has just given me the best back and shoulders massage I have ever had. I’m going to post this, and then lie back in the calmness it has induced……….

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Another misty start to the day again - and today is t+14 - incredible how quickly time has gone by, but now it’s official - I’ve had enough! However it looks as if I may have to stay until Monday. (But on the bright side, I’ll see Kim the Aromatherapist again!)

The day has been standard so far - Obs, bloods and the morning drugs, including the chalky chews (they’ll never catch on the sweet shops). Breakfast came and went and I am just waiting for the morning infusion of Itraconazole to complete.

I felt very tired yesterday afternoon, and spent a lot of it dozing - I do feel very slothful in here. My only visitors were from the medical staff (Salah,the Transplant Registrar, and Sheeba, the SHO) closely followed by Rachel, the dietician.

Rachel has been a regular visitor from the date of my admission where she suggested a feeding tube (declined!) and then on a regular basis to ensure that my nutrition is OK. (Don’t you just have to love someone who tells you to eat all the ‘bad ‘things - chocolate, puddings, calorie dense stuff!). Of course our conversations have revolved around hospital food (which is actually prepared at St Thomas’s and chilled for its journey here, where it is reheated and distributed). She saw my comments on it (here) and has taken a copy to add to evidence she is collecting to try to change the system. Good luck Rachel, the whole ward will be behind you!

On the subject of food, it wasn’t until 7 o’clock arrived that I realised that dinner hadn’t. I made myself some chicken soup - which stayed down for about 5 minutes. In my earlier talk with Rachel, she had said that my stomach would be very acid. The effect of the soup on my stomach was like dropping an Alka Seltzer in water! That is probably way too much information, so I’ll close the subject.

Oh yes, the light bulb that Katie bought three weeks ago failed yesterday afternoon. A search of the ward has so far failed to find one… any one got a light?

(P.S. - A light bulb has just arrived - let there be light!)

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The forecast mist has materialised, St Paul’s looked very ghostly (or should that be spectral?) shrouded in the mist.

So far today has gone well, Obs at a more civilised time of 7:15 (Thank you Sinead) and I have had a visit by Sheeba (one of the medical team, and Viki - the haemotology nurse specialist. The IV Itraconazole has just been infused - I am NOT looking forward to going back to the oral form, although the rest of my drug regime is gradually changing to oral. I have just been given some calcium tablets to chew - think very finely ground strawberry (artificial medical strawberry) flavoured compressed chalk…

I’m not sure if the Hickman line will remain in place when I go - it makes taking blood and giving IV drugs very easy, but can be a source of infection and needs careful looking after.

Yesterday continued with a surprise visit to the X ray department for a chest x ray. Again I was chauffeured in a wheelchair, but I think this porter must have aspirations to be a racing driver! We shot along the corridors, wind whistling in my hair (well, it would have done if I had any…) I elected to take a gentle stroll back!

After lunch, over which we will draw a merciful veil (beige!) the sun emerged and I went to sit out of the room on the other side of the ward, which is again bereft of beds. Very pleasant in the sunlight, and then a visit by Nicki and Rachel from City Hospital.

Some of you may know that I have appeared on CH in the past, after both the self donated transplants. This time the team have been filming snapshots of my progress over the last three months, and how it has lead to the transplant. We had a natter about that, and then a general chat before they headed back to their home - walking in preparation for the Southern/ 100Km walk - good luck!

I had to smile during the afternoon. One of the hospital cleaners turned up with an industrial vacuum cleaner. The floors are all polished tiles, and so easy to clean. This cleaner was designed to clean right up into the corners and along edges - but only if it is pushed there! I don’t know when the bag was last changed or emptied, but looking in the beams of sunlight, there seemed to be more dust and fluff in the air after the cleaning effort than before! A dust redistribution exercise, rather than dust removal!

Felicity arrived just in time to witness dark beige dinner, and to take some of the surplus clothes and stuff that I have accumulated. During the course of the evening, I began to feel shivery, and my temperature started increasing - leading to the suspicion that I was developing an infection. I suppose it was inevitable really - it happened on both the last transplants, although that was when I was neutropenic. My neutrophil count today was 2.4 - slightly down on yesterday, but still within range. Anyway, at midnight I started intravenous antibiotics and this morning my temperature is back to normal, and I feel a lot better! One downside is that I might not be able to go home on Friday if I am still on the IV antibiotics - it might be delayed until Monday - but I’ll keep on lobbying!

The news of the blog has reached my fellow isolationist, another Mark, who has posted the occasional comment. Yesterday afternoon saw the arrival of Jean - her husband also asked for details. Mark will, we hope be out of isolation soon. Jean, we wish you all the best.

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