Saturday 8th to Sunday 9th December 2007
An uneventful two days spent recovering from my two weeks “in dock”. Phone calls all round to keep Anna, Matthew, Daphne, Peter, family and friends up to date. My appetite is still minimal and I sleep at least two hours during the day. I am unsure how my weight is, but suspect it is down.
Friday 7th December 2007
I am nil by mouth overnight and have my bone marrow biopsy taken by Sangeeta under sedation. It makes all the difference! I come round about 11.20am for a brief discussion with Tim Corbett, the memory of which is lost in the mists of the sedation. I don’t think he said anything that I hadn’t heard before. I sleep on to 1pm and have a late lunch, followed by my CT scan. I then get myself packed and wait for Tina to collect me. I am not sure whether my two weeks of treatment have made any significant difference to the condition of my lungs. I suppose the CT scan will say it all. Have met a few more fellow patients who have helped make yet another stay in hospital bearable and amusing and I wait to hear what next.
Thursday 6th December 2007
My early morning routine is turned upside down when I don’t have my Tazocin infusion until 7.40am. Funny how institutionalised you can get in hospital. Even so I eventually get down to the shop getting papers for myself and others from my ward and the ward I was in for my birthday. Nothing like keeping the brain active! I have an enormous coughing-up session from 10am to 12midday, which leaves me exhausted. It is broken only by a visit from Dr. Sangeeta. She tells me I will be discharged tomorrow after a CT scan and a bone marrow biopsy, with Ciprofloxacin as my ongoing anti-biotic. Sr. Peter gives me Holy Communion after lunch and I then rest for a couple of hours before Tina visits. Thank goodness for my I-pod. Fortunately my lungs have decided to be quiet for the afternoon and evening. I celebrate the end of my Metronidazole-induced alcohol fast with an evening Guinness - purely for medicinal purposes of course. I do not start my late evening Tazocin and Gentamicine until 12.40am and so I don’t get to sleep until 2.20am! I finish reading Anna Politkovskaya’s “Russian Diary”. What a country and what a crooked regime!
Wednesday 5th December 2007
I am seen by Tim Corbett again today. He has had a chat with Steve Devereux about my situation and Steve’s view is to recommend going ahead with the transplant in January despite the shift in the odds. Tina visits me earlier than usual as it is her day off. I am not missing much on the weather front recently as it has been lousy outside. Sister Peter calls by briefly after lunch. I also have another visit from Rebecca, the physio. She advises that I am being a bit too enthusiastic with my breathing and coughing, hence the sore throat. I should be more gentle. The rest of the day I sleep, read and blog. My weight today is 73.4 kgs as weighed on the scales in the Haemotology Day Unit.
Tuesday 4th December 2007
I see Sangeeta this morning just as I am finishing my lung exercises. I am coughing up a lot more today, both before and after the exercises, giving me a bit of a sore throat. I ask her if my dilated alveoli will recover in time. Her answer suggested probably unlikely. I have a visit from Mia early afternoon and then am transported to Brighton General Hospital for my lung function test. I recognise John the ambulance driver from my police patrolling days in Mid Sussex back in the 70s and 80s! The lung test is disrupted somewhat by my still coughing up stuff. At one time I have to lie on the floor to make the coughing easier, simulating the lung exercises! I then have a visit from Jim, with Tina arriving shortly after he leaves. My coughing and the visits have tired me out and I sleep through the whole evening with my I-pod. My weight is 73.8 kgs.
Monday 3rd December 2007
Staff nurse Kate sees me this morning gleefully announcing that I have to do a 24 hour urine collection starting at 11am. This is one of the pre-transplant requests from Kings, which also included an echo-cardiogram and a lung function test. I discuss the chest situation with Tim Corbett when he sees me on his round. Unfortunately the Pseudomonas has colonised in my lungs, rather than being simply an infection and I will take it with me into the transplant. It will be a case of keeping it under some sort of control prior to and during the transplant - and afterwards no doubt. Tim’s assessment is that this moves the percentages for risk and success by something between 5 and 10%. I have the echo-cardiogram in the afternoon and then Tina visits me. I tell her about this latest assessment and we have a big hug-in. The renal unit seems to have a lot of confusing staff shift patterns so I see different people through the day. There are not so many nurses who are aufait with Hickman lines and the whole thing ran rather late such that I had my last Tazocin infusion at 1am. I had a bit of energy in the evening and started catching up on last week’s blog. My blood results today are - Wbc: 4.9; Neuts: 3.0; Hbn: 9.7; and PLT: 71. My weight is 73.6.kgs.
Thursday, 3 January 2008
Thursday, 13 December 2007
A Week of Treatment for my Chest
Sunday 2nd December 2007
The morning routine has not settled yet and I don’t have my blood samples taken from my Hickman line at the time I have my first Tazacin infusion. Instead one of the phleb team takes them in the traditional way from my arm. It turns out they don’t get to the laboratory or the results are not put on record! Sister Peter brings me Holy Communion at 11.30am and Tina follows shortly afterwards, while Anita is cooking lamb shank at home. I have a restful afternoon and evening, reading the Sunday paper and checking out my camera. My weight today is 72.9 kgs but I suspect the scales are inaccurate.
Saturday 1st December 2007
Today is my 64th birthday! Fancy spending it in hospital! The change to a different nursing regime is quite noticeable. The Renal team appears to have a higher nurse - patient ratio, although they do have health care assistants to help as well. I get observations at 6am and then see no one until 9.30am, when my Tazacin infusion is usually given to me around 7am. Matthew visits at 1.30pm with a super present of a book about the battles of 1916. Tina comes in at 4pm with Anita and Bob, who are up for the weekend. I have a stack of birthday cards, a birthday balloon and my present is a Nikon SLR digital camera! With my old Canon having gone caput a few months back and my intending to replace it after my transplant, this came as a complete surprise. Tina also brings me a chocolate birthday cake and this is followed by another cake, with candles, from the kitchen staff with all the nurses singing me “Happy Birthday”. All very embarrassing but very nice. Shortly after Tina and company leave I am offered a move back to ward 1, but I am still under the Renal nursing team. Having missed my afternoon nap, I have a long sleep in the evening. My blood results today are - Wbc: 2.5; Neuts: 1.5; Hbn: 10.4; and PLT: 72. My weight is 74.4 kgs.
Friday 30th November 2007
Today has started very well. After calling Dave Lloyd with a welfare update, I get calls from Steve Scott, Martin Stevens and Jeanette. I see Ros Johnston on her rounds. We conclude that things seem to progressing quite well as I am bringing up lots of the nasty stuff from my lungs with my physio exercises. She tells me that Steve Devereux has been in contact with Tim Corbett to suggest that under the circumstances it would be best to put the transplant back to after Christmas. My CT scan could be at the end of next week before my discharge or sometime in the following week. I have visits from Sarah and Paul and then Mia again. All six beds in Haemotology are taken and another patient is having to be admitted, so late afternoon I am moved from ward 1 to ward 3 and my nursing care is “sub-contracted out” to the Renal team. I have less shelf space for all my things! Then toiletry evidence suggests that the C. Difficile “scare” may be over, but I am taking the Metronidazole until Sunday. My blood results today are - Wbc: 4.2; Neuts: 2.5; Hbn: 9.6; and PLT: 69.
Thursday 29th November 2007
I have a passing visit from Sister Peter around lunch time. As my neutrophils are 1.9 today I have a dose of GCSF and it is looking like I will be having GCSF every other day in order to keep my levels above 2.0. It is a lovely day outside so my afternoon exercise is a walk right round the outside of the hospital. The day is generally uneventful, except for a few changes of patients in the ward. Tina visits about 5pm en route to an evening at Matthew and Charrise’s. My blood results are - Wbc: 3.7; Neuts: 1.9; Lymph: 1.4; Hbn: 9.3; and PLT: 74. My weight is 74.2 kgs.
Wednesday 28th November 2007
I get a morning visit from Matthew together with decorative masks made for me by Ella and Lily. That cheers me up no end! I am also cheered by Sangeeta’s conveying to me the possibility that a CT scan might be sufficient to measure progress with the treatment. Thus avoiding the need for a further bronchoscopy. This will be confirmed later after consultation with the chest team. Tina has had a day out shopping in Brighton with Linda and Sue from work and they visit me about 4pm. Whilst they are here, Sangeeta comes with news that I may have to be moved from Haemotology to Catherine James ward. I am very reasonable about it, although saying that I would prefer not. Tina takes a far more determined stand and it does not happen! Good for her. I think I would have simply “rolled over”. I am well into Anna Politkovskaya’s diary - heavy stuff going on in Russia and Chechnya, with top level sanctioned murders, the re-creation of a “single party” state and electoral vote rigging. The latter is confirmed in the subsequent state elections of 2nd December!
Tuesday 27th November
As I am getting my first Tazocin infusion anywhere between 6 and 7am, I find I am showering around 7.15am or 7.30am whilst no one else is trying to get to the shower / toilet at that time. That sets me up nicely for breakfast and then a walk down to the hospital shop to get my paper - and for one or two others in the ward. The exercise is good for me and so is the routine - well so far anyway! My lung exercises seem to be going well. I see Sangeeta Atwal for my morning check up. As my diarrhoea is persisting, she advises I try to drink three litres of liquids per day, so as not to dehydrate. She has also prescribed a saline nebulizer four times daily to help loosen the mucus in my lungs. My blood results are - Wbc: 3.8; Neuts: 2.0; Lymph: 1.5; Hbn: 9.8; PLT: 568 and CRP 5. My weight is back down to 73.2 kgs.
Monday 26th November 2007
I am having honey and mixed nuts with my Ready Brek breakfast to make it tastier and Tina has brought in some Smoothies for me as well. With a slice of toast, that makes quite a filling breakfast. I am also trying to have a Fortisip three time a day, although often I am feeling too full to have it. I have visits today from Joyce and Vincent Meagher and Mia Morris. In the afternoon Rebecca, the physic, sees me and explains the physio-therapy breathing exercises I should do. The idea is to inflate the lungs in such a way as to draw out the mucus from the alveoli but to avoid excessive coughing. I am to do them twice daily for about 15 minutes - and they seem to work straight away! She recommends I have regular daily exercise, like walks around the ward. I learn that my lung condition is called bronchiectasis. I also hear that Andre Jansen from Kings has called the ward for an update on my situation. Tina visits as usual about 4.30pm. My blood results are - Wbc: 4.8; Neuts: 3.1; Lymph: 1.2; Hbn: 9.5; PLT: 59; and CRP < 5. I spend the evening resting and reading.
The morning routine has not settled yet and I don’t have my blood samples taken from my Hickman line at the time I have my first Tazacin infusion. Instead one of the phleb team takes them in the traditional way from my arm. It turns out they don’t get to the laboratory or the results are not put on record! Sister Peter brings me Holy Communion at 11.30am and Tina follows shortly afterwards, while Anita is cooking lamb shank at home. I have a restful afternoon and evening, reading the Sunday paper and checking out my camera. My weight today is 72.9 kgs but I suspect the scales are inaccurate.
Saturday 1st December 2007
Today is my 64th birthday! Fancy spending it in hospital! The change to a different nursing regime is quite noticeable. The Renal team appears to have a higher nurse - patient ratio, although they do have health care assistants to help as well. I get observations at 6am and then see no one until 9.30am, when my Tazacin infusion is usually given to me around 7am. Matthew visits at 1.30pm with a super present of a book about the battles of 1916. Tina comes in at 4pm with Anita and Bob, who are up for the weekend. I have a stack of birthday cards, a birthday balloon and my present is a Nikon SLR digital camera! With my old Canon having gone caput a few months back and my intending to replace it after my transplant, this came as a complete surprise. Tina also brings me a chocolate birthday cake and this is followed by another cake, with candles, from the kitchen staff with all the nurses singing me “Happy Birthday”. All very embarrassing but very nice. Shortly after Tina and company leave I am offered a move back to ward 1, but I am still under the Renal nursing team. Having missed my afternoon nap, I have a long sleep in the evening. My blood results today are - Wbc: 2.5; Neuts: 1.5; Hbn: 10.4; and PLT: 72. My weight is 74.4 kgs.
Friday 30th November 2007
Today has started very well. After calling Dave Lloyd with a welfare update, I get calls from Steve Scott, Martin Stevens and Jeanette. I see Ros Johnston on her rounds. We conclude that things seem to progressing quite well as I am bringing up lots of the nasty stuff from my lungs with my physio exercises. She tells me that Steve Devereux has been in contact with Tim Corbett to suggest that under the circumstances it would be best to put the transplant back to after Christmas. My CT scan could be at the end of next week before my discharge or sometime in the following week. I have visits from Sarah and Paul and then Mia again. All six beds in Haemotology are taken and another patient is having to be admitted, so late afternoon I am moved from ward 1 to ward 3 and my nursing care is “sub-contracted out” to the Renal team. I have less shelf space for all my things! Then toiletry evidence suggests that the C. Difficile “scare” may be over, but I am taking the Metronidazole until Sunday. My blood results today are - Wbc: 4.2; Neuts: 2.5; Hbn: 9.6; and PLT: 69.
Thursday 29th November 2007
I have a passing visit from Sister Peter around lunch time. As my neutrophils are 1.9 today I have a dose of GCSF and it is looking like I will be having GCSF every other day in order to keep my levels above 2.0. It is a lovely day outside so my afternoon exercise is a walk right round the outside of the hospital. The day is generally uneventful, except for a few changes of patients in the ward. Tina visits about 5pm en route to an evening at Matthew and Charrise’s. My blood results are - Wbc: 3.7; Neuts: 1.9; Lymph: 1.4; Hbn: 9.3; and PLT: 74. My weight is 74.2 kgs.
Wednesday 28th November 2007
I get a morning visit from Matthew together with decorative masks made for me by Ella and Lily. That cheers me up no end! I am also cheered by Sangeeta’s conveying to me the possibility that a CT scan might be sufficient to measure progress with the treatment. Thus avoiding the need for a further bronchoscopy. This will be confirmed later after consultation with the chest team. Tina has had a day out shopping in Brighton with Linda and Sue from work and they visit me about 4pm. Whilst they are here, Sangeeta comes with news that I may have to be moved from Haemotology to Catherine James ward. I am very reasonable about it, although saying that I would prefer not. Tina takes a far more determined stand and it does not happen! Good for her. I think I would have simply “rolled over”. I am well into Anna Politkovskaya’s diary - heavy stuff going on in Russia and Chechnya, with top level sanctioned murders, the re-creation of a “single party” state and electoral vote rigging. The latter is confirmed in the subsequent state elections of 2nd December!
Tuesday 27th November
As I am getting my first Tazocin infusion anywhere between 6 and 7am, I find I am showering around 7.15am or 7.30am whilst no one else is trying to get to the shower / toilet at that time. That sets me up nicely for breakfast and then a walk down to the hospital shop to get my paper - and for one or two others in the ward. The exercise is good for me and so is the routine - well so far anyway! My lung exercises seem to be going well. I see Sangeeta Atwal for my morning check up. As my diarrhoea is persisting, she advises I try to drink three litres of liquids per day, so as not to dehydrate. She has also prescribed a saline nebulizer four times daily to help loosen the mucus in my lungs. My blood results are - Wbc: 3.8; Neuts: 2.0; Lymph: 1.5; Hbn: 9.8; PLT: 568 and CRP 5. My weight is back down to 73.2 kgs.
Monday 26th November 2007
I am having honey and mixed nuts with my Ready Brek breakfast to make it tastier and Tina has brought in some Smoothies for me as well. With a slice of toast, that makes quite a filling breakfast. I am also trying to have a Fortisip three time a day, although often I am feeling too full to have it. I have visits today from Joyce and Vincent Meagher and Mia Morris. In the afternoon Rebecca, the physic, sees me and explains the physio-therapy breathing exercises I should do. The idea is to inflate the lungs in such a way as to draw out the mucus from the alveoli but to avoid excessive coughing. I am to do them twice daily for about 15 minutes - and they seem to work straight away! She recommends I have regular daily exercise, like walks around the ward. I learn that my lung condition is called bronchiectasis. I also hear that Andre Jansen from Kings has called the ward for an update on my situation. Tina visits as usual about 4.30pm. My blood results are - Wbc: 4.8; Neuts: 3.1; Lymph: 1.2; Hbn: 9.5; PLT: 59; and CRP < 5. I spend the evening resting and reading.
Back in Hospital to Sort out my Chest
Sunday 25th November 2007
I am up and doing about 8am. I have a return of diarrhoea overnight and have to give samples. My weight this morning is 74.2 kgs - up a little. Father David Foley calls to give me Holy Communion after breakfast and I am seen by Tim Corbett and Sangeeta around 11.20am. I am to have some more Metronidozole strong anti-biotics for the diarrhoea to deal with any possible return of C. Difficile. This means no alcohol, so the “Guinness plan” has to be suspended. The medical plan is to run the intra-venous anti-biotics together with the physic-therapy for the next two weeks, then repeat the CT scan and bronchoscopy to track progress. The idea is to optimise my chest condition ahead of the impending transplant and to liaise with Kings on timing. It is possible that the latest provisional date I have for admission to Kings - 10th December - might still be a runner, if it is decided to go straight from here to the transplant. If not, perhaps a week later might still be feasible. Tina arrives at 12.20pm followed shortly by Bill and Jan Swallow. After Tina left I made my blog up to date and type out some emails to overseas cousins and friends. I don’t have my Gentamycin dose this evening as its level in my blood is still high and too much might affect my kidneys. Clever aren’t they? I have a quiet evening reading and I give Mary Roberts a call. My blood results today are - Wbc: 2.3;
Neuts: 1.2; Lymph: 0.9; Hbn: 9.1; and PLT: 59.
Saturday 24th November 2007
I am awake at 7.15am for a blood test and my morning Tazocin. I check my weight. It is 75 kgs on ward scales, but 73.2 kgs on the walk-on scales in the Day Unit downstairs. I must try not to get paranoid about a) my weight; and b) the differences between various weighing scales! My breakfast includes Ready Brek, the nearest the hospital can get to porridge and it is quite tasty! Tina calls to tell me that our 5 amp fuse has blown again. It blew about two weeks ago for the first time in years, but twice in short time is significant. It is also a very cold morning. I talk her through the repair. This is overheard by my bed neighbour, Terry, who gives me some good advice about getting a new fuse box and having our wiring checked over and maybe replaced. Given my situation and with winter approaching we want to minimise any electrics problems in the house. I call Stephen Pitt as he knows every handy person in our area!
I am checked over by Dr Sangeeta Atwal, the new registrar. I am still bringing up plenty of stuff from my lungs. I am to have a dose of immunoglobulin - Vigam - later today to strengthen my immune system. I am also prescribed Puriton anti-histermine tablets to help with the annoying itching I am still getting on my back, chest and arms. I am using the Doublebase cream to sooth the irritation, but guess I just have to put up with it for the moment. I am finding my appetite is slowly returning to normal and hopefully, I can start to put on some weight again. Tina visits me from 2pm for a couple of hours, bringing me a few goodies, including some cut pineapple and Guinness - purely for medicinal purposes of course! My Vigam infusion runs for about two hours to 6.30pm and is followed by an hour of Gentamycin. I then have a doze for an hour in the evening before getting back into my book. I bed down around midnight.
Friday 23rd November 2007
I have another easy morning but Tina hurts her lower back, bending to pick something up. She was a little energetic raking leaves in the garden on Wednesday and felt a slight twinge then. As a consequence she does not go in to work. By 11am I feel rather tired and have two hours sleep on the settee! We are just getting lunch when I have a call from the RSCH to say I can be admitted this afternoon. I do not want to risk Tina doing anything more to her back and fortunately Jim is available to take me down. I am admitted to a shared ward - Renal and Haematology - with six beds, two of which are for haematology patients. I am in bed 11 with Abi looking after me until 8pm. I am on Tazocin four times per day and Gentamycin once. I have these at 7.30pm with a second Tazocin around 11pm. The air conditioning in the ward gives it a temperature just below comfortable. It is probably ok for people on the move all the time, like the staff, but not so warm for the patients! I send 28 text messages to family and friends to say that I am in here. I have started reading “A Russian Diary” by Anna Politkovskaya, the journalist who was murdered for her anti Putin government views.
Monday 19th to Thursday 22nd November 2007
I have had my chest infection(s) for over twelve weeks now and no end in sight! Having had my bronchoscopy on Friday I am hoping to get a clearer picture of the problems today in my clinic with Tim Corbett. First thing today is to get the filling done in my wisdom tooth. I have had a temporary filling for over ten weeks and it really needed doing. I have had the ok from Kings for the treatment and Andre’s letter requests I have a short course of general anti-biotics afterwards. My dentist does some neat work and then prescribes me five days of Amoxycillin 250mgs. That is a good job done! My stomach definitely seems to have shrunk since Friday and I have not eaten that much over the weekend. A combination of several things I expect. I started the Voraconozole on Thursday evening and that may have shifted the balance somewhat. My porridge breakfast is a another squeeze and I force a sandwich down me for lunch. Tina comes with me for my afternoon clinic which is with Ros Johnston as Tim is still on the ward. Vicky Tindell and Nicola Worcester are in on it as well. Unfortunately the results from the bronchoscopy are not available but Ros tells me that I need to be admitted for seven to ten days of anti-biotic treatment - what form depending on the type of bug(s) they have found in the bronchoscopy samples. I will also have some form of physio-therapy to help shift the muck in my lungs. I have an image of being beaten on the chest by seven dusky maidens, but don’t expect that will happen! I can now stop the folic acid and furosemide tablets. My neutrophils are 2.7 today and my weight is down 2.2 kgs since last week at 72.8 kgs. Not surprising really as I have lost the fluid in my lower legs as well as my appetite. The stir-fry chicken dinner tonight is just right for me.
There is no bed for me on Tuesday but I have to go to the RSCH for my Pentamidine nebuliser at 3pm. I start catching up on last week’s blog in the morning and then have an hour’s sleep before lunch. I feel uncomfortably full long after breakfast and lunch, thanks to my shrunken stomach and hope this effect does not last too long. Strangely I think my taste buds have taken another turn. Perhaps it is the after-effects of Friday, or my new medications, or a combination of both. Whatever it is I am feeling peculiar and am not happy about it! Tina takes me down to Brighton as I sense I could feel a bit groggy after the nebuliser. Senior staff nurse Diane supervises my Pentamidine and tells me that there will be a bed for me on the Haematology ward tomorrow. I am still tired when I get home and have an hour and a half’s sleep. I have a Guinness before a light tuna and rice dinner.
Wednesday is another frustrating day as there is still no bed for me. Tina and I have a fairly brisk walk out for 30 minutes around 10am to get some fresh air in my lungs. I have not been getting any exercise of late and it was good for me to do it. I finish last week’s blog, struggle with some lunch and then have three hours sleep from 3pm. Food is still not a pleasure!
There is no bed again for me on Thursday and I am told that it will now be Saturday. I am coughing up phlegm quite a bit and wonder if my chesty problem has taken a change of some sort. I have an easy morning and get out to stretch my legs and get some air in my lungs before lunch. Tina and I go down to the RSCH at 3.30pm for my routine blood test. My results are - Wbc: 4.3; Neuts: 2.6; Lymph: 1.2; Hbn: 10.1; PLT: 82; and CRP: 6. My weight today has gone up a bit since Monday to 74 kgs.
I am up and doing about 8am. I have a return of diarrhoea overnight and have to give samples. My weight this morning is 74.2 kgs - up a little. Father David Foley calls to give me Holy Communion after breakfast and I am seen by Tim Corbett and Sangeeta around 11.20am. I am to have some more Metronidozole strong anti-biotics for the diarrhoea to deal with any possible return of C. Difficile. This means no alcohol, so the “Guinness plan” has to be suspended. The medical plan is to run the intra-venous anti-biotics together with the physic-therapy for the next two weeks, then repeat the CT scan and bronchoscopy to track progress. The idea is to optimise my chest condition ahead of the impending transplant and to liaise with Kings on timing. It is possible that the latest provisional date I have for admission to Kings - 10th December - might still be a runner, if it is decided to go straight from here to the transplant. If not, perhaps a week later might still be feasible. Tina arrives at 12.20pm followed shortly by Bill and Jan Swallow. After Tina left I made my blog up to date and type out some emails to overseas cousins and friends. I don’t have my Gentamycin dose this evening as its level in my blood is still high and too much might affect my kidneys. Clever aren’t they? I have a quiet evening reading and I give Mary Roberts a call. My blood results today are - Wbc: 2.3;
Neuts: 1.2; Lymph: 0.9; Hbn: 9.1; and PLT: 59.
Saturday 24th November 2007
I am awake at 7.15am for a blood test and my morning Tazocin. I check my weight. It is 75 kgs on ward scales, but 73.2 kgs on the walk-on scales in the Day Unit downstairs. I must try not to get paranoid about a) my weight; and b) the differences between various weighing scales! My breakfast includes Ready Brek, the nearest the hospital can get to porridge and it is quite tasty! Tina calls to tell me that our 5 amp fuse has blown again. It blew about two weeks ago for the first time in years, but twice in short time is significant. It is also a very cold morning. I talk her through the repair. This is overheard by my bed neighbour, Terry, who gives me some good advice about getting a new fuse box and having our wiring checked over and maybe replaced. Given my situation and with winter approaching we want to minimise any electrics problems in the house. I call Stephen Pitt as he knows every handy person in our area!
I am checked over by Dr Sangeeta Atwal, the new registrar. I am still bringing up plenty of stuff from my lungs. I am to have a dose of immunoglobulin - Vigam - later today to strengthen my immune system. I am also prescribed Puriton anti-histermine tablets to help with the annoying itching I am still getting on my back, chest and arms. I am using the Doublebase cream to sooth the irritation, but guess I just have to put up with it for the moment. I am finding my appetite is slowly returning to normal and hopefully, I can start to put on some weight again. Tina visits me from 2pm for a couple of hours, bringing me a few goodies, including some cut pineapple and Guinness - purely for medicinal purposes of course! My Vigam infusion runs for about two hours to 6.30pm and is followed by an hour of Gentamycin. I then have a doze for an hour in the evening before getting back into my book. I bed down around midnight.
Friday 23rd November 2007
I have another easy morning but Tina hurts her lower back, bending to pick something up. She was a little energetic raking leaves in the garden on Wednesday and felt a slight twinge then. As a consequence she does not go in to work. By 11am I feel rather tired and have two hours sleep on the settee! We are just getting lunch when I have a call from the RSCH to say I can be admitted this afternoon. I do not want to risk Tina doing anything more to her back and fortunately Jim is available to take me down. I am admitted to a shared ward - Renal and Haematology - with six beds, two of which are for haematology patients. I am in bed 11 with Abi looking after me until 8pm. I am on Tazocin four times per day and Gentamycin once. I have these at 7.30pm with a second Tazocin around 11pm. The air conditioning in the ward gives it a temperature just below comfortable. It is probably ok for people on the move all the time, like the staff, but not so warm for the patients! I send 28 text messages to family and friends to say that I am in here. I have started reading “A Russian Diary” by Anna Politkovskaya, the journalist who was murdered for her anti Putin government views.
Monday 19th to Thursday 22nd November 2007
I have had my chest infection(s) for over twelve weeks now and no end in sight! Having had my bronchoscopy on Friday I am hoping to get a clearer picture of the problems today in my clinic with Tim Corbett. First thing today is to get the filling done in my wisdom tooth. I have had a temporary filling for over ten weeks and it really needed doing. I have had the ok from Kings for the treatment and Andre’s letter requests I have a short course of general anti-biotics afterwards. My dentist does some neat work and then prescribes me five days of Amoxycillin 250mgs. That is a good job done! My stomach definitely seems to have shrunk since Friday and I have not eaten that much over the weekend. A combination of several things I expect. I started the Voraconozole on Thursday evening and that may have shifted the balance somewhat. My porridge breakfast is a another squeeze and I force a sandwich down me for lunch. Tina comes with me for my afternoon clinic which is with Ros Johnston as Tim is still on the ward. Vicky Tindell and Nicola Worcester are in on it as well. Unfortunately the results from the bronchoscopy are not available but Ros tells me that I need to be admitted for seven to ten days of anti-biotic treatment - what form depending on the type of bug(s) they have found in the bronchoscopy samples. I will also have some form of physio-therapy to help shift the muck in my lungs. I have an image of being beaten on the chest by seven dusky maidens, but don’t expect that will happen! I can now stop the folic acid and furosemide tablets. My neutrophils are 2.7 today and my weight is down 2.2 kgs since last week at 72.8 kgs. Not surprising really as I have lost the fluid in my lower legs as well as my appetite. The stir-fry chicken dinner tonight is just right for me.
There is no bed for me on Tuesday but I have to go to the RSCH for my Pentamidine nebuliser at 3pm. I start catching up on last week’s blog in the morning and then have an hour’s sleep before lunch. I feel uncomfortably full long after breakfast and lunch, thanks to my shrunken stomach and hope this effect does not last too long. Strangely I think my taste buds have taken another turn. Perhaps it is the after-effects of Friday, or my new medications, or a combination of both. Whatever it is I am feeling peculiar and am not happy about it! Tina takes me down to Brighton as I sense I could feel a bit groggy after the nebuliser. Senior staff nurse Diane supervises my Pentamidine and tells me that there will be a bed for me on the Haematology ward tomorrow. I am still tired when I get home and have an hour and a half’s sleep. I have a Guinness before a light tuna and rice dinner.
Wednesday is another frustrating day as there is still no bed for me. Tina and I have a fairly brisk walk out for 30 minutes around 10am to get some fresh air in my lungs. I have not been getting any exercise of late and it was good for me to do it. I finish last week’s blog, struggle with some lunch and then have three hours sleep from 3pm. Food is still not a pleasure!
There is no bed again for me on Thursday and I am told that it will now be Saturday. I am coughing up phlegm quite a bit and wonder if my chesty problem has taken a change of some sort. I have an easy morning and get out to stretch my legs and get some air in my lungs before lunch. Tina and I go down to the RSCH at 3.30pm for my routine blood test. My results are - Wbc: 4.3; Neuts: 2.6; Lymph: 1.2; Hbn: 10.1; PLT: 82; and CRP: 6. My weight today has gone up a bit since Monday to 74 kgs.
Wednesday, 21 November 2007
I Finish the Ambisome and Have Another Bronchoscopy
Saturday 17th to Sunday 18th November 2007
I have not slept too well probably because I slept so much yesterday. I eventually get up and have a tentative breakfast of porridge. I am not feeling hungry but know I must try to eat something. We have a lazy morning and my lunch is soup and some avocado pear. I have a visit from Michel after lunch and then rest up for the remainder of the afternoon. Strangely, I have two mugs of tea. I cannot remember the last time I had tea and enjoyed it! I have a cheese omelette for dinner but cannot taste it and rest up for the evening.
I manage some porridge again on Sunday morning, starting late and go to 10.30am Mass at Keymer. We arrive late, leave early and sit at the back, behind the glass screen. This is to avoid the risk of contact with a lot of people. Matthew, Charrise and the girls come for lunch, but I am feeling rather weary by 1pm, before they have arrived, and go up for an hour’s sleep. That helps. Tina’s Spanish pork casserole is good as usual. Today’s Observer carries an article about Pseudomonas as the new “super bug” causing fatalities in hospitals alongside MRSA and C. Difficile. Not very reassuring!
Friday 16th November 2007
I am “nil by mouth” from midnight and am woken up by staff nurse Leo about 6.40am for a blood test and to set up my platelets infusion, which runs for two hours. There is some confusion as to how I should get to the Endoscopy suite, but eventually I am escorted by two porters and a trolley bed! I have my procedure semi-prone - which feels strange - as opposed to sitting upright at Kings. However everything else seems to be better and I am conscious throughout, despite the sedation. Again it is something not to be repeated in a hurry! Kate Hurt carries out the procedure with the consultant, a Dr. Jackson, looking on with two rather interested students. There is the calming presence of a nurse - Jill - at my arm giving me reassurance and using a suction instrument in my mouth. Phase two - the obtaining of mucus samples doesn’t work and it is thought the instrument is faulty. Not so - a lump of my mucus had blocked the tube! At the end I am told that they have some good samples to check for bugs. However, Dr Jackson says that my airways are dilated; I will need physio-therapy and intra-venous anti-biotics as part of a plan to set me up for my transplant. He mentions Pseudomonas as a particular issue. He will be in touch with Tim Corbett about this and the results of the examination of the samples.
I feel quite good as I am moved into the recovery room, where I rest for an hour, but with a headache coming on strong. I ask for some paracetamol but cannot be given any as I am not on my ward. As I am being pushed back to my ward I am sick, although I have not eaten since 9pm the night before. I am told it is bile and that I am probably de-hydrated. I am given paracetamol, I should drink sips of water and I have some soup for my lunch. I then rest for another two hours before Tina comes to take me home. I am feeling a bit groggy and am glad I did not have to drive myself. Ten minutes into our journey and I am sick again. This is not nice at all! We get home to find the heating off and the house freezing because of a power cut. I go straight to bed and stay there. I am feeling lousy and just sleep. I have no food but keep on with the water.
In my post today I have a notification from Andre Jansen at Kings of a provisional admission date on 10th December for my transplant. Having learned what I have today about my chest problems, I wonder if this is yet another unlikely target date.
Monday 12th to Thursday 15th November 2007
I am into my third week of Ambisome treatment. There is some confusion over the dosage today due to some bad handwriting(!) but Santa is able to sort it out. I have my usual Monday Hickman line “care”, blood tests and then see Tim Corbett in his clinic. My chest is still the main topic of conversation. I am to have a CT scan tomorrow and another bronchoscopy on Friday - deep joy! I still have bits of rash on my chest and arms, so there is something still causing an allergic reaction. There are no conclusions on that, but perhaps it could be the Ambisome? My weight today is 75 kgs and my blood results are - Wbc: 5.8; Neuts: 3.9; Lymph: 1.2; Hbn: 10.4; PLT: 65.
I check my blog on Tuesday and find I have a comment from Danny Tall, my good friend from my very first Kings experience back in February. He had the “all clear” at his last clinic, which is great news. In the afternoon I have my Ambisome in the Day Unit and then go for my CT scan. There is no time for blood tests today.
We have a lazy morning on Wednesday and then Tina and I go to Brighton together. I have my last session of Ambisome and it is decided I should move on to Voraconozole, a tablet form of anti-fungal treatment - 200mg twice daily. My blood results today are: Wbc: 6.4; Neuts:4.6; Hbn: 10.6; and PLT: 65. It is arranged that I should come back tomorrow morning for a chat with a doctor from the Chest Team about my bronchoscopy.
On Thursday I see Dr Kate Hurt from the Chest Team about tomorrow’s bronchoscopy. I am to come in later today to stay overnight, so that I can be given some platelets before the procedure. Although I am prescribed a month’s supply of Voraconozole, I am only given two weeks’ worth at the hospital pharmacy; typical! I don’t have the inclination to take issue with them about it, besides my two hours parking is about to expire! Tina brings me back to the RSCH at 6.30pm and I have a room in the Haematology Ward. Familiar territory.
I have not slept too well probably because I slept so much yesterday. I eventually get up and have a tentative breakfast of porridge. I am not feeling hungry but know I must try to eat something. We have a lazy morning and my lunch is soup and some avocado pear. I have a visit from Michel after lunch and then rest up for the remainder of the afternoon. Strangely, I have two mugs of tea. I cannot remember the last time I had tea and enjoyed it! I have a cheese omelette for dinner but cannot taste it and rest up for the evening.
I manage some porridge again on Sunday morning, starting late and go to 10.30am Mass at Keymer. We arrive late, leave early and sit at the back, behind the glass screen. This is to avoid the risk of contact with a lot of people. Matthew, Charrise and the girls come for lunch, but I am feeling rather weary by 1pm, before they have arrived, and go up for an hour’s sleep. That helps. Tina’s Spanish pork casserole is good as usual. Today’s Observer carries an article about Pseudomonas as the new “super bug” causing fatalities in hospitals alongside MRSA and C. Difficile. Not very reassuring!
Friday 16th November 2007
I am “nil by mouth” from midnight and am woken up by staff nurse Leo about 6.40am for a blood test and to set up my platelets infusion, which runs for two hours. There is some confusion as to how I should get to the Endoscopy suite, but eventually I am escorted by two porters and a trolley bed! I have my procedure semi-prone - which feels strange - as opposed to sitting upright at Kings. However everything else seems to be better and I am conscious throughout, despite the sedation. Again it is something not to be repeated in a hurry! Kate Hurt carries out the procedure with the consultant, a Dr. Jackson, looking on with two rather interested students. There is the calming presence of a nurse - Jill - at my arm giving me reassurance and using a suction instrument in my mouth. Phase two - the obtaining of mucus samples doesn’t work and it is thought the instrument is faulty. Not so - a lump of my mucus had blocked the tube! At the end I am told that they have some good samples to check for bugs. However, Dr Jackson says that my airways are dilated; I will need physio-therapy and intra-venous anti-biotics as part of a plan to set me up for my transplant. He mentions Pseudomonas as a particular issue. He will be in touch with Tim Corbett about this and the results of the examination of the samples.
I feel quite good as I am moved into the recovery room, where I rest for an hour, but with a headache coming on strong. I ask for some paracetamol but cannot be given any as I am not on my ward. As I am being pushed back to my ward I am sick, although I have not eaten since 9pm the night before. I am told it is bile and that I am probably de-hydrated. I am given paracetamol, I should drink sips of water and I have some soup for my lunch. I then rest for another two hours before Tina comes to take me home. I am feeling a bit groggy and am glad I did not have to drive myself. Ten minutes into our journey and I am sick again. This is not nice at all! We get home to find the heating off and the house freezing because of a power cut. I go straight to bed and stay there. I am feeling lousy and just sleep. I have no food but keep on with the water.
In my post today I have a notification from Andre Jansen at Kings of a provisional admission date on 10th December for my transplant. Having learned what I have today about my chest problems, I wonder if this is yet another unlikely target date.
Monday 12th to Thursday 15th November 2007
I am into my third week of Ambisome treatment. There is some confusion over the dosage today due to some bad handwriting(!) but Santa is able to sort it out. I have my usual Monday Hickman line “care”, blood tests and then see Tim Corbett in his clinic. My chest is still the main topic of conversation. I am to have a CT scan tomorrow and another bronchoscopy on Friday - deep joy! I still have bits of rash on my chest and arms, so there is something still causing an allergic reaction. There are no conclusions on that, but perhaps it could be the Ambisome? My weight today is 75 kgs and my blood results are - Wbc: 5.8; Neuts: 3.9; Lymph: 1.2; Hbn: 10.4; PLT: 65.
I check my blog on Tuesday and find I have a comment from Danny Tall, my good friend from my very first Kings experience back in February. He had the “all clear” at his last clinic, which is great news. In the afternoon I have my Ambisome in the Day Unit and then go for my CT scan. There is no time for blood tests today.
We have a lazy morning on Wednesday and then Tina and I go to Brighton together. I have my last session of Ambisome and it is decided I should move on to Voraconozole, a tablet form of anti-fungal treatment - 200mg twice daily. My blood results today are: Wbc: 6.4; Neuts:4.6; Hbn: 10.6; and PLT: 65. It is arranged that I should come back tomorrow morning for a chat with a doctor from the Chest Team about my bronchoscopy.
On Thursday I see Dr Kate Hurt from the Chest Team about tomorrow’s bronchoscopy. I am to come in later today to stay overnight, so that I can be given some platelets before the procedure. Although I am prescribed a month’s supply of Voraconozole, I am only given two weeks’ worth at the hospital pharmacy; typical! I don’t have the inclination to take issue with them about it, besides my two hours parking is about to expire! Tina brings me back to the RSCH at 6.30pm and I have a room in the Haematology Ward. Familiar territory.
Tuesday, 13 November 2007
A Second Week of Anti-Fungal Treatment
Monday 5th to Sunday 11th November 2007
I have another complete week of Ambisome intra-venous anti-fungal treatment. At his Monday clinic Tim Corbett puts me on GCSF on alternate days as he wants to keep my neutrophils above 2.0 during this current treatment regime and today they are only 1.2. My allergy rash continues annoyingly through the week, despite the anti-histamine tablets. I remain around 75 kgs all week, despite all efforts to put on a bit of weight. My neutrophils range between 2.2 and 3.9 with the alternate days of GCSF. My haemoglobin and platelets average 10.5 and 60 through the week. I am generally tired and have about two hours sleep most afternoons or evenings. Despite that we call in for tea and birthday cake on Mia’s third birthday on Thursday, have a pub lunch on Wednesday and I have a pint of Harveys in the New Inn on Friday. We also visit Terry and Les for tea on Saturday afternoon. Otherwise it is a quiet and uneventful week.
I have another complete week of Ambisome intra-venous anti-fungal treatment. At his Monday clinic Tim Corbett puts me on GCSF on alternate days as he wants to keep my neutrophils above 2.0 during this current treatment regime and today they are only 1.2. My allergy rash continues annoyingly through the week, despite the anti-histamine tablets. I remain around 75 kgs all week, despite all efforts to put on a bit of weight. My neutrophils range between 2.2 and 3.9 with the alternate days of GCSF. My haemoglobin and platelets average 10.5 and 60 through the week. I am generally tired and have about two hours sleep most afternoons or evenings. Despite that we call in for tea and birthday cake on Mia’s third birthday on Thursday, have a pub lunch on Wednesday and I have a pint of Harveys in the New Inn on Friday. We also visit Terry and Les for tea on Saturday afternoon. Otherwise it is a quiet and uneventful week.
Tuesday, 6 November 2007
A Week of Anti-Fungal Treatment
Monday 29th to Sunday 4th November 2007
I am feeling much better now. Although I still have a lot of nasty coloured catarrh, my cough is getting minimal. On Monday I have my Ambisome and then have a wait for Tim Corbett’s weekly clinic. He is quite pleased with my chest, although there is still a bit of a rattle down there. The fungal infection I have is called Aspergillus. From what I have read there are lots of different types. At least I know the name. He thinks I will have to have two, possibly three weeks of Ambisome. The good news, however, is that I am to come off the Itroconozole (yippeeeee!) as it clearly is no longer the effective anti-fungal it should be and the Ambisome has temporarily taken its place. He will put me on the tablet Voraconazole after we stop the Ambisome. This is the other drug in the clinical trial I signed up to recently to go along with my transplant. It looks like the decision on what drug I will Have has now been made! My blood results today are - Wbc: 2.7; Neuts: 1.2; Lymph: 1.0; Hbn: 11.1; and PLT: 72. My weight today is 74.8 kgs. I have a GCSF injection when I get home.
The rest of the week follows much the same pattern; daily Ambisome, driving myself down to hospital, except when Tina comes down with me on Wednesday and Jim does the honours on Friday so that Tina could have the car. My neutrophils go from 4.5 on Tuesday - after the GCSF - down to 1.0 on Friday. The GCSF takes them back to 3.3 on Saturday and 2.3 on Sunday. My weight fluctuates between 74.6 and 76 kgs - for reasons I cannot understand! - ending on Sunday with 75.8 kgs. I am feeling drowsy every day and most days I have two or three hours sleep in the afternoon or evening. Perhaps it is the Ambisome or - more likely - the anti-histamine tablets, Hydroxycine Hydrochloride.
We go to Matthews for some supper on Tuesday and have Stephen and Sue for dinner on Saturday night. It is such a shame my appetite is so small and I am still unable to enjoy a glass of wine, although the champagne was good!
I have been finding that the three ends of my Hickman line are a real nuisance. The square ends are quite sharp and stick into my skin. This is particularly irritating as the skin on my chest and stomach areas is already very sensitive with the rash. So I have shaved the corners smooth with a nail file and - hey presto - no more irritation! Now that is a good Hickman line tip for any readers!
I am feeling much better now. Although I still have a lot of nasty coloured catarrh, my cough is getting minimal. On Monday I have my Ambisome and then have a wait for Tim Corbett’s weekly clinic. He is quite pleased with my chest, although there is still a bit of a rattle down there. The fungal infection I have is called Aspergillus. From what I have read there are lots of different types. At least I know the name. He thinks I will have to have two, possibly three weeks of Ambisome. The good news, however, is that I am to come off the Itroconozole (yippeeeee!) as it clearly is no longer the effective anti-fungal it should be and the Ambisome has temporarily taken its place. He will put me on the tablet Voraconazole after we stop the Ambisome. This is the other drug in the clinical trial I signed up to recently to go along with my transplant. It looks like the decision on what drug I will Have has now been made! My blood results today are - Wbc: 2.7; Neuts: 1.2; Lymph: 1.0; Hbn: 11.1; and PLT: 72. My weight today is 74.8 kgs. I have a GCSF injection when I get home.
The rest of the week follows much the same pattern; daily Ambisome, driving myself down to hospital, except when Tina comes down with me on Wednesday and Jim does the honours on Friday so that Tina could have the car. My neutrophils go from 4.5 on Tuesday - after the GCSF - down to 1.0 on Friday. The GCSF takes them back to 3.3 on Saturday and 2.3 on Sunday. My weight fluctuates between 74.6 and 76 kgs - for reasons I cannot understand! - ending on Sunday with 75.8 kgs. I am feeling drowsy every day and most days I have two or three hours sleep in the afternoon or evening. Perhaps it is the Ambisome or - more likely - the anti-histamine tablets, Hydroxycine Hydrochloride.
We go to Matthews for some supper on Tuesday and have Stephen and Sue for dinner on Saturday night. It is such a shame my appetite is so small and I am still unable to enjoy a glass of wine, although the champagne was good!
I have been finding that the three ends of my Hickman line are a real nuisance. The square ends are quite sharp and stick into my skin. This is particularly irritating as the skin on my chest and stomach areas is already very sensitive with the rash. So I have shaved the corners smooth with a nail file and - hey presto - no more irritation! Now that is a good Hickman line tip for any readers!
Monday, 5 November 2007
A Bronchoscopy Finds a Fungal Infection
Monday 22nd to Sunday 28th October 2007
I am down to the RSCH for Tim Corbett’s Monday clinic. My weight has gone up 1.6 kgs in the week to 75.4. My blood results are - Wbc: 2.6; Neuts: 0.8; Hbn: 11.6; and PLT: 73. As a consequence I give myself a dose of GCSF this evening. I still have a bit of a rattle in my chest. Tim has a look at my allergic rash, which has now spread from chest to shoulders, stomach, arms, neck and head - and is very itchy. He prescribes me two weeks of antihistamine tablets - Hydroxyzine Hydrochloride 25 mg three times daily - aware that I will be seeing a dermatologist at Kings on Tuesday or Wednesday.
On Tuesday Jim takes me up to Kings late afternoon and I am admitted a day ahead of my bronchoscopy. I renew acquaintances with several of the nursing staff from my past stays in Davidson Ward and the Derek Mitchell Unit - which is nice. I am seen by one of the haematology doctors and later by a chest consultant, who runs through what will happen tomorrow. Sounds pretty gruesome! I must have nil by mouth from midnight.
I am woken at 4.30am for a belated blood sample. Whilst I do not have any breakfast, I have some confused conversations about whether I can take my Itroconazole - I leave it - and how much water I can drink to take my tablets! I go for my bronchoscopy - or bronchiole alveolar lavage - at 10.30am, before which I am given 213 mls of platelets. They are a strange yellow colour, much like National Health orange juice used to look - but not to be confused! I sign away for the procedure having been assured that it will be uncomfortable and, despite the anaesthetic and sedative, so it turns out. In fact it is a most uncomfortable 15 minutes and not to repeated if I can help it! I have a tube inserted up my nose, down my throat and into one of my bronchi. A saline solution is used to flush the bronchioles and then suck up whatever is down there. Afterwards I see some nasty looking specimen jars lurking nearby, but I am too dozy to ask about them. I don’t remember how I got back to the ward. I slept for the next two hours. Whilst I am in a dazed state I am seen by two dermatologists about my rash. I don’t realise just how dazed I am until I try to remember afterwards what is said. They tell me that they will prescribe two different creams, a moisturiser called Doublebase and a steroid-based ointment called Eumovate, but I have no idea - or have forgotten - how they should best be applied, etc.
Tina is outside the hospital at 3.35pm but I am still waiting for the pharmacy - as usual. We get away 15 minutes later. My blood results today are - Wbc: 3.71; Neuts: 2.4; Hbn: 11.2; and
PLT: 66. We struggle a bit to work out the best way to put on my creams, ie before or after washing or showering, which one first, what, if any, intervals, etc.
Late Thursday afternoon I get a call from Kings telling me that they have found a fungal infection from my bronchoscopy. Arrangements are made for me to have a daily one hour dose of the anti-fungal Ambisome intra-venously at the day unit at the RSCH starting tomorrow. Isn’t that just great! One more thing!
I am down to Brighton for a 10.30am appointment on Friday for my first infusion of Ambisome. They have to make up the bag of Ambisome themselves in the unit as it comes in a powder form and is mixed with water. Saline solutions cannot be used as it solidifies. My dosage is 228 milligrams making just under 300 mls of total solution. I am told by Vicky Tindall that I will have daily blood tests as they need to monitor my white cells, kidney function and a number of nutrient levels. Ambisome can affect these and, if so, they would then have to change me on to another drug. I am finding that putting Eumovate on the rash area around my Hickman line entry point stops my putting plasters there as the plasters do not stick! I am told that as my line has set very well at its point of entry then I do not really need a plaster, other than to keep the three access “tassels” from dangling down too far or being tugged. So I can certainly manage for the time being without a plaster. My weight today is 75.6 kgs. My bloods results are - Wbc: 2.8; Neuts: 1.3; Lymph: 1.0; Hbn: 11.0; PLT: 74. As it is considered best to keep my Neutrophils above 2.0 while I am on this anti-fungal, I am given a dose of GCSF to self administer later today.
With the Day Unit closed for the weekend, I go to the Haematology Ward for my treatments. I see Paul Hill briefly on both days. He explains to me that both the fungal and bacterial chest infections I have are sitting latent in the body and have been activated in my case because of my low immune system. In other words I did not pick them up from a dodgy air conditioning system at Kings! My weight has gone down to 75.2 kgs. We have Tony and Pam for a much postponed lunch on Sunday - which was nice. I am still not enjoying wine. I sleep for two hours in the evening. My blood results today are - Wbc: 3.4; Neuts: 1.3; Lymph: 1.5; Hbn: 11.1; and PLT: 72.
I am down to the RSCH for Tim Corbett’s Monday clinic. My weight has gone up 1.6 kgs in the week to 75.4. My blood results are - Wbc: 2.6; Neuts: 0.8; Hbn: 11.6; and PLT: 73. As a consequence I give myself a dose of GCSF this evening. I still have a bit of a rattle in my chest. Tim has a look at my allergic rash, which has now spread from chest to shoulders, stomach, arms, neck and head - and is very itchy. He prescribes me two weeks of antihistamine tablets - Hydroxyzine Hydrochloride 25 mg three times daily - aware that I will be seeing a dermatologist at Kings on Tuesday or Wednesday.
On Tuesday Jim takes me up to Kings late afternoon and I am admitted a day ahead of my bronchoscopy. I renew acquaintances with several of the nursing staff from my past stays in Davidson Ward and the Derek Mitchell Unit - which is nice. I am seen by one of the haematology doctors and later by a chest consultant, who runs through what will happen tomorrow. Sounds pretty gruesome! I must have nil by mouth from midnight.
I am woken at 4.30am for a belated blood sample. Whilst I do not have any breakfast, I have some confused conversations about whether I can take my Itroconazole - I leave it - and how much water I can drink to take my tablets! I go for my bronchoscopy - or bronchiole alveolar lavage - at 10.30am, before which I am given 213 mls of platelets. They are a strange yellow colour, much like National Health orange juice used to look - but not to be confused! I sign away for the procedure having been assured that it will be uncomfortable and, despite the anaesthetic and sedative, so it turns out. In fact it is a most uncomfortable 15 minutes and not to repeated if I can help it! I have a tube inserted up my nose, down my throat and into one of my bronchi. A saline solution is used to flush the bronchioles and then suck up whatever is down there. Afterwards I see some nasty looking specimen jars lurking nearby, but I am too dozy to ask about them. I don’t remember how I got back to the ward. I slept for the next two hours. Whilst I am in a dazed state I am seen by two dermatologists about my rash. I don’t realise just how dazed I am until I try to remember afterwards what is said. They tell me that they will prescribe two different creams, a moisturiser called Doublebase and a steroid-based ointment called Eumovate, but I have no idea - or have forgotten - how they should best be applied, etc.
Tina is outside the hospital at 3.35pm but I am still waiting for the pharmacy - as usual. We get away 15 minutes later. My blood results today are - Wbc: 3.71; Neuts: 2.4; Hbn: 11.2; and
PLT: 66. We struggle a bit to work out the best way to put on my creams, ie before or after washing or showering, which one first, what, if any, intervals, etc.
Late Thursday afternoon I get a call from Kings telling me that they have found a fungal infection from my bronchoscopy. Arrangements are made for me to have a daily one hour dose of the anti-fungal Ambisome intra-venously at the day unit at the RSCH starting tomorrow. Isn’t that just great! One more thing!
I am down to Brighton for a 10.30am appointment on Friday for my first infusion of Ambisome. They have to make up the bag of Ambisome themselves in the unit as it comes in a powder form and is mixed with water. Saline solutions cannot be used as it solidifies. My dosage is 228 milligrams making just under 300 mls of total solution. I am told by Vicky Tindall that I will have daily blood tests as they need to monitor my white cells, kidney function and a number of nutrient levels. Ambisome can affect these and, if so, they would then have to change me on to another drug. I am finding that putting Eumovate on the rash area around my Hickman line entry point stops my putting plasters there as the plasters do not stick! I am told that as my line has set very well at its point of entry then I do not really need a plaster, other than to keep the three access “tassels” from dangling down too far or being tugged. So I can certainly manage for the time being without a plaster. My weight today is 75.6 kgs. My bloods results are - Wbc: 2.8; Neuts: 1.3; Lymph: 1.0; Hbn: 11.0; PLT: 74. As it is considered best to keep my Neutrophils above 2.0 while I am on this anti-fungal, I am given a dose of GCSF to self administer later today.
With the Day Unit closed for the weekend, I go to the Haematology Ward for my treatments. I see Paul Hill briefly on both days. He explains to me that both the fungal and bacterial chest infections I have are sitting latent in the body and have been activated in my case because of my low immune system. In other words I did not pick them up from a dodgy air conditioning system at Kings! My weight has gone down to 75.2 kgs. We have Tony and Pam for a much postponed lunch on Sunday - which was nice. I am still not enjoying wine. I sleep for two hours in the evening. My blood results today are - Wbc: 3.4; Neuts: 1.3; Lymph: 1.5; Hbn: 11.1; and PLT: 72.
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