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.
Thursday 13 December 2007
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.
Subscribe to:
Posts (Atom)
