Week Two in Kings and I Nearly Get Home

Monday 20th to Sunday 26th August 2007

Sunday 26th August 2007

I wake with a definite cough this morning and bringing up chesty phlegm. I have more catarrh as well. I am asked to give a sample of sputum. It is green - not so good. I mention this to the two Sarahs; I am checked over and given an all clear for today. My blood sample is taken at the second attempt, helped by the heat pad. It seems that the veins in my right arm are much easier to access than those in my left - and this has been the case for the past few days. Tina arrives at 1pm and stays for three hours. Just before she leaves I get my blood results, which tell me that my neutrophils have gone up again - to 0.54. My full results are - Wbc: 0.94; Neut: 0.54; Lymph: 0.38; Hbn: 9.8; PLT: 51. My weight this morning was 75 kgs again.

Saturday 25th August 2007

My weight is 75 kgs this morning. My blood samples are taken easily after using the heat pad and I have no discomfort with my anti-biotics even though the cannula is in an awkward and slightly painful place. I now have diarrhoea(!) - such that I have to give a sample for analysis. The little plug of congealed blood comes out from the “head” of my infected thumb. I keep it but is of no real interest to the doctors when they come - two Sarahs. But the good news is that my neutrophils have doubled since yesterday. My blood counts are - Wbc: 0.93; Neut: 0.49; Lymph: 0.42; Hbn: 10.8; PLT: 54; CRP: 10.7.

Fr. Luke gives me Holy Communion in the afternoon, which is otherwise spent watching Rugby League and Union through to 7pm. My anti-biotics boluses are quite uncomfortable despite the cannula being only 20 hours old. I am catching up well with my blog entries, bearing in mind how many days I let slip by feeling up to doing it. Despite realising some days ago that I should be doing leg strengthening exercises, I have not got down to doing any yet! So I have decided to put a reminder on my mobile phone for the afternoon and evening and I do six or eight knee bends - at least it is a start. I have also started a cough this afternoon; this on top of an increase in catarrh and nose blowing in recent days.

Friday 24th August 2007

I am awoken at 5.30am so they can have early blood samples. I suggest the heat pad will help - and it does. Staff Nurse Susie has no problem getting a large number of samples. The process is repeated later in the morning when some further samples are required and it works successfully again for Jinky. I am 76 kgs again today. I spend the morning on my blog, before lunch and then Matthew and Charrise both arrive at the same time. It is their anniversary and they are in town for the day and overnight, having dinner at Mon Plaisir and seeing “Joseph”. My blood transfusion is started at 12.30pm. Tina calls me to say that Steve Scott has offered to drive up with her to collect me. Isn’t that great! One of the pharmacists comes by to go through my discharge medications with me. She says with confidence that they will all be with me by 3.30pm. I say that I will believe that when I see it and of course they arrive at 5pm. Fortunately I am not held up because of that as Tina arrives at the same time and we do the final packing. In the meantime I have had a discharge chat with Dr Lara about my temperature not being below 37 for the last 36 hours. I also point out that as I am having the second unit of blood and whilst talking to her I am having a hot flush for half an hour or more. She checks me over and says that I am ok as long as my temperature does not go above 37.4c. Looking ahead I ask if there is a possibility of having the kidney function test, the fitting of the Hickman line and the clinic appointment with Steve Devereux all arranged for the same day.

I then have a very interesting visit from someone from the Hospital’s infection control team to check on the cleanliness of my room. I take the opportunity to mention something that has been bugging me for months, particularly in relation to MRSA. This is that, with the exception of here in the Derek Mitchell Unit, in all my recent experiences of three hospitals and at least six wards - maybe more counting Darenth Valley - I have never seen or heard a member of nursing staff challenge anyone as to whether they have cleaned their hands before visiting a patient - NEVER, EVER! There seems to be a total reliance on visitors - or whoever - knowing they should do it as they enter a ward or being reminded by their reading the advisory notices - which are of varying quality and visibility and can be passed by unseen. As a patient, I have never been told what infection control regime I should adhere to either. I am amazed that nursing staff do not seem to think it is within their responsibilities to “gatekeep” infection control on their wards. This, despite the huge media focus on MRSA and other hospital based infections. So the lady from Infection Control got more than she expected from her visit to me! She explained that her unit ran training for nursing staff on Infection Control and she would feedback my comments into the training they did.

At 6pm Tina is with me, I am packed and ready to go, when I notice that the little plug of dried blood at the core of my infected thumb had popped out and was hanging on by a small piece of tissue, exposing a small hole underneath. I am not happy about this, so I ask that a doctor see it. Fortunately it is Kat who comes and she doesn’t like the look of it, but more importantly notices that my thumb is more inflamed than yesterday. So we made a complete volte face. I am to stay in order to go back on intra-venous anti-biotics! Tina agrees that it is the right thing to do, despite otherwise wanting me to come home. I go downstairs to see and thank Steve for his kindness today and to apologise for the waste of his time this afternoon and evening and they leave for Hurst. I call Daphne and send some text messages to those I had triumphantly told I was coming home. I have to have a new cannula fitted. This does not get done until 11.30pm, at the third painful attempt, when I have one inserted on my right wrist in a rather awkward position. My anti-biotics go in alright and without any pain, but my hand and wrist are uncomfortable all night. I doze on my bed until 2am before tucking down. My blood counts today are - Wbc: 0.56; Neut: 0.23; Lymph: 0.32; Hbn: 8.6; PLT: 42. I do not get a CRP reading on the print out.

Thursday 23rd August 2007

I am up and showered before breakfast, but I have a very uncomfortable time having the anti-biotics through my cannula, which is just over 48 hours old. Time for yet another one. Despite the heat pad Staff Nurse Jinky has no joy getting my blood samples, so Snr. Staff Nurse Malin comes to the rescue fitting a new cannula on my left forearm and getting my blood samples from it. I am blogging at 11.15am. After lunch I am taken to the Nuclear Medicine Unit for a heart scan or “MUGA” to see how strong my heart is. I come out radio active! Tina, Anna and Eva arrive while I am there. We get back to my room, get news that my neutrophils hav gone up a shade to 0.26 and meet up with Steve Devereux, Lara, Kat and a delightful, Professor Duvivier, consultant dermatologist - he of the colourful and flamboyant bow tie! (check title). There ensues a fascinating examination and clinical discussion about my infected thumb, its history and levels of discomfort over the past few weeks. Professor Duvivier is enthusiastic about exploring inside but Steve Devereux is cautious as my low immune system could leave me open for more problems. So it is to be left to see how it progresses. The polite interplay between these two professionals is a joy to witness! Steve then discusses my situation with us and concludes that, with an apparent rising immune system, I can go home. I am to come off intra-venous anti-biotics and on to tablet form, I must watch out for any adverse change in the condition of my thumb and have twice weekly blood tests at Brighton. The transplant can go ahead in about four or five weeks time with the “C mismatch” donor initially identified a couple of months ago. The Hickman line fitting can be put back to nearer the transplant time, I have to have a kidney function check some time in the next 4 weeks and also to see him in his clinic to talk through the detail of the transplant. So it is great news!

My blood results today are - Wbc: 0.51; Neut: 0.26; Lymph: 0.24; Hbn: 8.6; PLT: 39; and CRP: 10.5. My weight is 76 kgs. With my Hbn count at 8.6, I am also to have 2 units of blood. I am later told that there is a new policy that blood can only be given between 9am and 5pm. Considering how, in my past experience, I always seem to be having blood through to the late the evening, I will believe that when I see it! I have a dozy evening.

Wednesday 22nd August 2007

My early morning Merapenam bolus and attendant flushes are uncomfortable again.
However, when it comes to taking my regular blood sample and the 500 ml of blood for Steve Devereux’s research, Staff Nurse Marianita uses the heat pad on my arm and I bleed from the crook of my arm readily and painlessly- at last! My weight is back to 77 kgs this morning, confirmed by an accurate machine later today. At 11am I have a lung function check. It takes more than an hour overall and seems to go pretty well. The analysed results have to be worked out before I find out what they are. Cold soup and lukewarm dinner follow. I hate this 12 midday institutional lunchtime! I hear that Steve Devereux was on the ward and looking for me while I was out! - but I am seen by Dr. Kat anyway. She tells me I have an appointment for the fitting of a Hickman line next Monday and using my time here to have several of the necessary checks, etc. done that are needed in preparation for the transplant, so saving days when the time comes for it. She also tells me the good news that my neutrophils today have gone up to 0.24! This is great news as it is the first time the neutrophils have come off the floor since 6th August -over two weeks ago. I celebrate in the evening with a Guinness while watching England lose 2-1 to Germany at football. I have a visit from Tessa after work which was nice and then I show Staff Nurse Marianita how blunt the needles on the GCSF packs are by a practical demonstration. She agrees with me and will feed this back to the pharmacists. My full blood results today are: Wbc: 0.51; Neut: 0.24; Lymph: 0.25; Hbn: 9.4; PLT: 36; and CRP: 11.3.

Tuesday 21st August 2007

More problems getting blood from me at 7.30am and after one try, it is aborted and not attempted again today. My weight today is up at 79 kgs and I notice I still have plenty of oedema in my legs. I am seen by Dr. Lara after lunch and get the latest thoughts on the possible next moves. We cover the difficulties getting blood samples from me, cannula lifespan, plasma exchange and a femoral line (now less likely), installing a PICC line (unlikely) and installing a Hickman line (most likely) ahead of its need for the bone marrow transplant. So, provided it can be done really soon, the Hickman line would be the answer to both problems of obtaining blood samples and 24 hour cannula lifespans. It transpires that it is not imperative to have blood samples every day and that every other day will suffice. Lara mentions a request from Dr. Devereux for a blood sample for his research work. With the likelihood of my having a residue of Campath in my blood, he wants to use it to help set up a method of measuring and tracking amounts of Campath in the blood over time. She reiterates that he hopes to see me as soon as he can. Tina arrives just in time to come with me while I have an x-ray - a routine procedure for all patients on my ward today.

I contact Dave Lloyd in Sussex Police Welfare giving him some idea about likely forthcoming travel costs for Tina when I am up here with the bone marrow transplant. He will check on Welfare policy and make an application on our behalf. Having contributed for 39 years, it seems reasonable to ask for something back. It will certainly help! I am told that I no longer have to fill in the “liquids - in - and - out” forms, as they don’t really apply to me; but it was good practice for the future. My late evening bolus of Meropenam was quite uncomfortable and had be done very slowly. I am still reading “Rough Crossings”. It is fascinating and very revealing of early 19th vision - and prejudices.

Monday 20th August 2007

My second week starts with feeling rather dozy after my late getting to bed last night - 3am after four hours of blood transfusion. Yesterday’s difficulties getting blood samples from me are repeated this morning with Veronica having three unsuccessful attempts around 7.30am. This was followed by Genette having one try at 11am before making way for Snr Staff Nurse Arlene who gets blood out of the back of my right thumb! - but painfully. This is hopeless. My veins have gone into retreat! If we had known that I would be hospitalised this long then I would have had a PICC line fitted weeks ago. Unfortunately, this was not foreseen as we were going from day to day in the vain (geddit!) hope that “something would turn up” on the neutrophil front. Now we seem to be stuck here trying - as it were - to get blood out of a stone! Oh well, the power of hindsight! Late morning and I get a visit from Dr. Steve Schey telling me that they have concluded the likely explanation for my stubborn neutrophil count is residual Campath in my blood / bone marrow and that they are thinking a way forward would be to give me a plasma transplant. This requires their taking blood from me, siphoning off the plasma content using a clever machine and replacing it with donor plasma. The idea is that hopefully this will get rid of the excess Campath and give me “clear” plasma in return. He opines that otherwise, I could be here for some time what with my infected thumb. He tells me that Steve Devereux wants to talk things through with me this afternoon. In the afternoon I have visits from Steve Bloomfield from the office and Michael, the volunteer helper. Unfortunately it is a “no show” from Steve Devereux. Perhaps tomorrow. My blood results today are - Wbc: 0.45; Neut: 0.18; Lymph: 0.26; Hbn: 9.6; PLT: 34; CRP: 8.4 - and my weight is 77.5 kgs.

At 11pm Snr Staff Nurse Olivia tries to give me my Meropenam but we find that just flushing the cannula is painful, so that’s yet another 24 hour maximum cannula gone. I am re-cannulated in the back of my left hand by the duty doctor and then have the Meropenam, finishing at 12.30am. - another late night!