20121101-10 In and out of hospital

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201211
THURSDAY 1 NOVEMBER 2012 – I spend the morning working, learning all about the mystery shopper procedure with Gapbuster website so I can sign up to do Pizza Hut checks. One thing I have learnt is how strict they are on quality, cleanliness and procedure. The hospital phones and we learn that Dr Gilleece has decided that based on Steve’s blood test results we can drop down to once a week checks just at Leeds which is brilliant. My 2” memory foam mattress arrives and works well on top of the sofa bed mattress. When I head downtown Steve is checking it out. In the evening Sandra and I head off to the beginners/intermediate line dancing class. Strictly come dancing we are not as they are all new dances to what we both know so next week we will be going to the beginners class but we do get a good work out.
KEIGHLEY – (+27)

FRIDAY 2 NOVEMBER – With no nagging and left to his own devices Steve didn’t bother to shower of get dressed yesterday so today I am on the case. With the central heating radiator on and a fan heater in the door way I manage to get the bathroom up to about 50C to entice Steve to shower then get dressed. With great reluctance he layers up and takes a walk up the street but with nothing more than his eyes exposed to the element he still feels really chilly. No matter how warm we can get him the minute he moves he starts shivering and his hands tremble. Claire pops round in the evening and agrees we have to figure out things for Steve to do rather than just lollop around and test mattresses all day.
KEIGHLEY – (+28)

SATURDAY 3 NOVEMBER – Steve gets up late morning and feels bad but really can’t explain exactly why. He’s lost his appetite and only wants light snacks. After lunch he suggests a walk toward the paper shop but only makes it part way and I pick him up on the way back and pretty much have to push him up the slope. I spend time on line reading the Gapbuster mystery shopper manuals for Pizza Hut and McDonalds and at the end of the day have passed both tests. You get 3 attempts in one sitting to complete a questionnaire and must get 100% to enable you to be certified to do work for that company. Next challenge will be KFC and Texaco!
KEIGHLEY – (+29)

SUNDAY 4 NOVEMBER – Steve manages to get up and dressed just before Claire & Natasha arrive for lunch. I’ve cooked a full roast pork dinner but Steve’s hands are shaking so much I have to cut his food to enable him to eat it and even then it is a struggle for him to even get half way through. He spends the afternoon lying on the sofa bed with Claire & Natasha watching home videos but even when resting his breathing seems to be hard work and I am getting quite concerned.
KEIGHLEY – (+30)

MONDAY 5 NOVEMBER – Steve tells me his has diarrhoea and reading the transplant manual I confirm that even after one bout we should immediately phone the hospital. I speak to a sister who asks other questions about Steve’s well being and says she will speak to the Doctor then call us back. I’m just preparing a late lunch when we get a phone call to say there is a bed for Steve. I am shocked as I was expecting a returned call with advice but they want Steve in to make an assessment. Arriving at 2.30pm we find it is the acute admissions Oncology ward and Steve is in private room 14. Dr Hannah comes round, asks lots of questions and does many tests on Steve including neurological ones. They seem as concerned about Steve’s shivering bouts, his restless legs and hand tremors as they are about his diarrhoea. The room has a massive window and as it gets dark we get to see quite a few firework displays. Over the next few hours blood, urine and poo samples are taken for analysis and Dr Hannah says they will keep Steve in overnight and run a chest X-ray and maybe some breathing tests. He is really not happy about this but I feel we need to know why he is getting sicker. It’s late and Richard previously told me his school friend, manager of Cosmopolitan Hotel, would give me mates rates if I needed a room so I book in. On the back of my bus ticket I notice a McDonalds deal of big Mac and medium fries for £1.99 so call in to eat and in my own mind do a mystery shopper assignment to see how I would fare. The hotel is in an old building and very nicely appointed. I have a king sized room and bathroom with bath. I wallow in the bath enjoying the complementary glass of wine before putting on the fluffy bathrobe and lying on the bed watching satellite TV.
LEEDS COSMOPOLITAN HOTEL, STEVE ST JAMES HOSPITAL. (+31)

TUESDAY 6 NOVEMBER – I speak to Steve and he says he went for the chest X-Ray last night. Since then nothing more has happened and he is concerned. He hasn’t had all his usual medication and no ciclosporin immunosuppressant since yesterday morning. I assure him the Doctors must know what they are doing and not to worry. My room rate includes breakfast, a cooked breakfast to order plus self service of fruit, yoghurt, cereals and toast so I take my time and read the complimentary paper at the same time. Check out is not until noon and as it is pouring with rain I return to the room to watch TV. I speak to Steve again and he sounds pretty upset so I head up to hospital early and sneak in before visiting time. The haematology registrar Marketa has been to see him and is trying to get him a room back on Ward J89 so they can run more tests. Steve is still worried about missing drugs so I get on the case and begin hassling people. A few hours later the pharmacist comes in to confirm exactly what Steve has been on as the missing ones still haven’t been ordered. Each patient has a dedicated nurse and Steve’s nurse tells us that it would do more good if I kept pestering the Doctors about Steve’s drugs than if she did it. Late afternoon Dr Hannah comes in and tells us the tests show that Steve has too much ciclosporin in his blood. He should have 150 – 200 but he has over 400 and although it will still be working as an immune suppressant the toxic side effects could explain some Steve’s symptoms. It may be that the dose has been too high. However they think Steve may also have a viral infection that may have caused the ciclosporin to over work but the results of those tests take 48 – 72 hours. Steve’s magnesium is low so they will correct that with a drip and that would cover some of the other symptoms including the restless legs. Marketa wants Steve to stay off the ciclosporin until Thursday am and stay in hospital at least until they have the viral results back so they can rethink the dose but he will have to stay where he is as there is no room on J89. It’s good news to know there is a reason and cure for Steve’s problems. With luck once they have the correct levels in his blood he will feel much better but he is still miffed about having to be back in hospital so soon. I opt to leave the car in the multi storey at Leeds (we have a free parking permit) so that the minute Steve is told he can come home I shall be ready with the car. Arriving back in Keighley station I have arranged for Nancy to meet me and come up for dinner.
KEIGHLEY – ST JAMES 2 (+32)

WEDNESDAY 7 NOVEMBER – At Carphonewarehouse I sign up for the Talkmobile 1 month SIM only contract giving me 200 min,s 500mb and 55 texts for £8 a month which is much better than o2. Steve is feeling a little better but they haven’t had the virus tests back so he will have to spend another night in hospital.
KEIGHLEY – ST JAMES 3 (+33)

THURSDAY 8 NOVEMBER – I’ve been having a few problems changing my phone number across but the guy at talkmobile is excellent in helping out, seems a much better service than o2. I give the house a thorough clean in anticipation of Steve coming home. Arriving at hospital I learn that his virus test and stool sample were both negative therefore the problem is down to the drugs and he can come home. It takes another hour or so to get his medication and discharge papers so we hit rush hour and an accident in Shipley and spend almost 2 hours getting home. Reading Steve’s notes they were not kidding about his ciclosporin count being above 400 as it was 499. He’s still very weak and fatigued but the restless legs and trembling are subsiding and they want us back next Wednesday for more tests and have reduced his ciclosporin from 80mg twice a day to 50mg twice.
KEIGHELY – (+34)

FRIDAY 9 NOVEBMER – I slept with Steve last night and rather well which is explained when he says he hardly slept at all. He doesn’t want to do anything today so I settle for him having the day in bed. I’ve been busy ordering thermal wear and warm trousers on the internet but missed the delivery so pick them up from the post office. Knowing we haven’t even got into the cold weather yet he is sure going to need them as he just can’t keep warm. Steve gets us for dinner then retires to bed as he isn’t feeling too well. At 5.30 pm we get a call from the Doctor at the hospital, apparently a virus test has now shown that Steve has the dreaded CMV (cytomegalovirus). The count should be 500 or less and anything above 5000 means hospitalisation and Steve’s is at 6900. Worryingly this is the biggest killer of patients post transplant so it is good that they want him in straight away to start treatment although Steve would have liked much more than 24 hours at home. Doctor says he will be in for about 1 to 2 weeks. Claire insists on changing plans and driving us to Leeds. By the time she arrives we’ve had another call to say that as they don’t have a bed yet it is better for us to stay at home and they will call when one is ready. Guess they are now playing the game of who can we send home tonight or shuffle around. By 7.30pm Steve is getting quite agitated and I phone to hear they are just about ready for us and we can head over. We’ve been told to go to acute admissions ward J96 but there they say there is now a bed on the haematology ward J89 where Steve was before. He’s allocated room 35 luckily again on the side with a view although by now he couldn’t care less as he really doesn’t want to be there at all. The Doctor may not be around until midnight so as soon as we know they have the “ganciclovir” drip ready to hook up we leave.
KEIGHLEY – ST JAMES 1 (+35)

SATURDAY 10 NOVEMBER – I speak to Steve who tells me this morning they tried to give him 80mg of ciclosporin, the drug that he recently had an overdose of and that has been reduced to 50mg. Whilst calling the sister to clarify Steve’s new drug regime I get the OK to go in early. Steve seems a little better and the shivers appear to have subsided. I request more information and Sister Vicky explains that the CMV virus was dormant in Steve’s body (as it is with about 70% of adults) but his low immune system has allowed it to kick off and it is not caused by anything we have done. We feel better when she explains that 6900 count is not too bad as other patients have been up at 120,000. On Monday they will re test in the hope that the ganciclovir is working. There is a second stronger drug but as Steve is likely to get CMV more than once they prefer to keep that in reserve. Once his counts come down he must have 3 days of negative count before being allowed home so we can see why his stay will be a minimum of 1 week. Guess that the internet information of stays from 2 – 6 weeks relates to the people with the very high count and we have been lucky for it to be detected at a relatively low level. We also discuss with Vicky the option of having the clinical psychologist pay Steve a visit to try and lift his spirits and that and more massage should be arranged for next week. Heading back through Leeds is lovely as I can admire the newly lit Christmas lights and a beautiful multi colour lit tree in town hall square. Arriving home Carol is waiting having driven up from Newport to visit. She’s bought one of the 2 for a tenner meal deals from Waitrose and in no time at all we are drinking wine whilst eating a chicken forrestiere meal. Natasha and Claire pop round for an hour with some buns Nat has just made. Carol and I end up talking until 11pm as I want to hear about the recent trip to New York.
KEIGHLEY – ST JAMES 2 (+36)