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.
Wednesday 21 November 2007
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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