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.
Tuesday, 23 October 2007
My New Admission Date is Set and then Put Back
Monday 15th to Sunday 21st October 2007
I have a blood test and attend Tim Corbett’s transplant clinic on Monday. This is a new clinic in which he sees pre- and post- transplant patients. Seems like a very good idea. Santa changes the Tegaderm dressing on my Hickman line to Mepore, because of my considerable allergic reaction. We conclude that my chest infection is getting better, but it will need checking in a week’s time. My weight today is down from last week at 73.8 kgs and my blood results are -Wbc: 2.6; Neuts: 1.1; Hbn: 11.7; PLT 87 and CRP: 5. Consequently I do myself a GCSF this evening. I am back to Brighton on Tuesday for my Pentamidine nebulizer.
I call Andre on Wednesday for the latest on my transplant. He tells me I should be admitted on 30th October, confirms that my no. 2 donor is lined up for “harvesting” and that my transplant date should be 8th November. Dr Devereux wants to see me this Friday and I will see the transplant team as well. I have an afternoon sleep for the first time in several days. Wednesday and Thursday are virtually “non days”. I am still sleeping quite a bit.
I see Steve Devereux at Kings on Friday morning after having my blood samples taken in the Day Room using my Hickman line. It is extremely busy there today. The consultation concentrates on my continuing chest infection as there is no way I will be going into a transplant procedure with it. The CT scan showed no sign of CLL and conjestion in the sinuses, but I really cannot remember what he said about down in my lungs, other than describing my bronchiole as a “tree in bud”. He wants me to come back early next week for a Bronchiole Alveolar Lavage (BAL) whereby they flush the farthest ends of the bronchioles to get out any nasty bits for examination. It may be that the Pseudomonas is just persisting - I am to continue with Ciprofloxacin for another two weeks - or there is another yet unidentified bug down there. He also wants to ensure that the infection is viral and not fungal. The procedure will be under anaesthetic with a sedative, so I will have to stay in one night. I later hear that this is lined up for Tuesday and Wednesday. I am asked to give a sputum sample, but I don’t think it was a very good one! Because of all this my transplant is put back another two weeks. I also point out that my apparent allergic reaction to the plasters has become a wider spread rash on my chest. I am to be seen by a dermatologist next week.
We have a busy weekend with Anna, Nick and Eva here Thursday and Friday nights and Linda and Paul, Friday through to Sunday. My taste buds are still a bit all over the place. I enjoy my beer and sandwich at the Royal Oak and discover that I am the only one of us who actually likes Fortisips! I have concluded that the great taste suppressant is most definitely the Itroconazole, as eating a lunchtime is far more pleasurable than breakfast or dinner. The weekend is spoiled by England’s losing in the Rugby World Cup Final and Lewis Hamilton’s failing to win the F1 Racing Championship in his first year.
I have a blood test and attend Tim Corbett’s transplant clinic on Monday. This is a new clinic in which he sees pre- and post- transplant patients. Seems like a very good idea. Santa changes the Tegaderm dressing on my Hickman line to Mepore, because of my considerable allergic reaction. We conclude that my chest infection is getting better, but it will need checking in a week’s time. My weight today is down from last week at 73.8 kgs and my blood results are -Wbc: 2.6; Neuts: 1.1; Hbn: 11.7; PLT 87 and CRP: 5. Consequently I do myself a GCSF this evening. I am back to Brighton on Tuesday for my Pentamidine nebulizer.
I call Andre on Wednesday for the latest on my transplant. He tells me I should be admitted on 30th October, confirms that my no. 2 donor is lined up for “harvesting” and that my transplant date should be 8th November. Dr Devereux wants to see me this Friday and I will see the transplant team as well. I have an afternoon sleep for the first time in several days. Wednesday and Thursday are virtually “non days”. I am still sleeping quite a bit.
I see Steve Devereux at Kings on Friday morning after having my blood samples taken in the Day Room using my Hickman line. It is extremely busy there today. The consultation concentrates on my continuing chest infection as there is no way I will be going into a transplant procedure with it. The CT scan showed no sign of CLL and conjestion in the sinuses, but I really cannot remember what he said about down in my lungs, other than describing my bronchiole as a “tree in bud”. He wants me to come back early next week for a Bronchiole Alveolar Lavage (BAL) whereby they flush the farthest ends of the bronchioles to get out any nasty bits for examination. It may be that the Pseudomonas is just persisting - I am to continue with Ciprofloxacin for another two weeks - or there is another yet unidentified bug down there. He also wants to ensure that the infection is viral and not fungal. The procedure will be under anaesthetic with a sedative, so I will have to stay in one night. I later hear that this is lined up for Tuesday and Wednesday. I am asked to give a sputum sample, but I don’t think it was a very good one! Because of all this my transplant is put back another two weeks. I also point out that my apparent allergic reaction to the plasters has become a wider spread rash on my chest. I am to be seen by a dermatologist next week.
We have a busy weekend with Anna, Nick and Eva here Thursday and Friday nights and Linda and Paul, Friday through to Sunday. My taste buds are still a bit all over the place. I enjoy my beer and sandwich at the Royal Oak and discover that I am the only one of us who actually likes Fortisips! I have concluded that the great taste suppressant is most definitely the Itroconazole, as eating a lunchtime is far more pleasurable than breakfast or dinner. The weekend is spoiled by England’s losing in the Rugby World Cup Final and Lewis Hamilton’s failing to win the F1 Racing Championship in his first year.
Tuesday, 16 October 2007
At Last my Chest Infection is Gradually Going
Monday 8th to Sunday 14th October 2007
I have a 10am appointment at the RSCH for my blood tests and a check of my Hickman Line on Monday. I wait quite a long time for the doctors to check me over and have to go out to move my car! Ros Johnston saw me with Dr. Marta. She increases my Ciprofloxacin to 14 days, adding that Pseudomonas is an awkward bug and, if things are not better by 7 to 10 days, I might have to come in for i/v anti-biotics. I hope that is not necessary as I have had enough of hospitals! - 12 weeks in 7 months is plenty for anyone! My weight today is down a bit to 74.4 kgs and my blood results are - Wbc: 2.5; Neuts: 1.0; Lymph: 1.2; Hbn: 11.9; PLT: 99; and CRP: <5. So I resume with GCSF just for today and await Thursday’s test. I am slightly surprised with my CRP reading as I would have thought it would be much higher, with the infection my body is having to deal with. I have decided to resume the daily Furosimide tablet as my legs appeared to thicken over the weekend. I manage to get through today without an afternoon sleep.
I spend Tuesday on paperwork and the computer, but get a nice surprise telephone call from my old friend Digby - from my 1970s detective days. We chew the fat; it was good. I have a bit of a sleep in the afternoon. I am coughing slightly less each day, it seems, but my appetite is no bigger. I am trying to keep up having Fortisips regularly, but it often slips.
Tina and I take rubbish to the tip and then go shopping in Burgess Hill, Wednesday morning. I have an hour’s sleep before lunch and then another hour plus afterwards. I don’t get much done today!
I have an 11.30am appointment in the RSCH Day Unit today, Thursday. I have the stitch removed from the line entry position and a new dressing. I have a rash on my chest. I think it is the Tegaderm dressing as it is quite itchy there, but Jason suggests not. I will give it a few days. My chest is checked out by Natalie, a trainee doctor. She is very pleased with it. Each day is getting slightly better. My weight today is 74.6 kgs and my blood results are - Wbc: 4.0; Neuts: 2.5; Lymph: 1.1; Hbn: 10.7; and PLT: 91.
On Friday I give Andre Jansen a call at Kings to check on progress with my no. 2 donor. He will get back to me on Monday, but meanwhile he books me to go up for a pre-transplant clinic on Thursday 18 October. Otherwise I have a quiet day catching up on things like our Christmas card lists, etc.
I get my ‘flu jab at Hassocks on Saturday morning, followed by some shopping in Burgess Hill. It is a sporting day with England football on TV in the afternoon and World Cup rugby on TV in the evening, the latter watched at Matthew’s along with his home cooked chicken curry - delicious, but more than I can eat. I just wish my taste buds were better. I am still piling on the salt to give anything flavour.
A nice easy start to Sunday with Mass at 10.30am. I find out that Annie’s daughter Holly will be having her kidney transplant about the same time as I have mine. We have a beer and sandwich lunch at the Royal Oak, followed by a dozy afternoon and another rugby watching evening.
I have a 10am appointment at the RSCH for my blood tests and a check of my Hickman Line on Monday. I wait quite a long time for the doctors to check me over and have to go out to move my car! Ros Johnston saw me with Dr. Marta. She increases my Ciprofloxacin to 14 days, adding that Pseudomonas is an awkward bug and, if things are not better by 7 to 10 days, I might have to come in for i/v anti-biotics. I hope that is not necessary as I have had enough of hospitals! - 12 weeks in 7 months is plenty for anyone! My weight today is down a bit to 74.4 kgs and my blood results are - Wbc: 2.5; Neuts: 1.0; Lymph: 1.2; Hbn: 11.9; PLT: 99; and CRP: <5. So I resume with GCSF just for today and await Thursday’s test. I am slightly surprised with my CRP reading as I would have thought it would be much higher, with the infection my body is having to deal with. I have decided to resume the daily Furosimide tablet as my legs appeared to thicken over the weekend. I manage to get through today without an afternoon sleep.
I spend Tuesday on paperwork and the computer, but get a nice surprise telephone call from my old friend Digby - from my 1970s detective days. We chew the fat; it was good. I have a bit of a sleep in the afternoon. I am coughing slightly less each day, it seems, but my appetite is no bigger. I am trying to keep up having Fortisips regularly, but it often slips.
Tina and I take rubbish to the tip and then go shopping in Burgess Hill, Wednesday morning. I have an hour’s sleep before lunch and then another hour plus afterwards. I don’t get much done today!
I have an 11.30am appointment in the RSCH Day Unit today, Thursday. I have the stitch removed from the line entry position and a new dressing. I have a rash on my chest. I think it is the Tegaderm dressing as it is quite itchy there, but Jason suggests not. I will give it a few days. My chest is checked out by Natalie, a trainee doctor. She is very pleased with it. Each day is getting slightly better. My weight today is 74.6 kgs and my blood results are - Wbc: 4.0; Neuts: 2.5; Lymph: 1.1; Hbn: 10.7; and PLT: 91.
On Friday I give Andre Jansen a call at Kings to check on progress with my no. 2 donor. He will get back to me on Monday, but meanwhile he books me to go up for a pre-transplant clinic on Thursday 18 October. Otherwise I have a quiet day catching up on things like our Christmas card lists, etc.
I get my ‘flu jab at Hassocks on Saturday morning, followed by some shopping in Burgess Hill. It is a sporting day with England football on TV in the afternoon and World Cup rugby on TV in the evening, the latter watched at Matthew’s along with his home cooked chicken curry - delicious, but more than I can eat. I just wish my taste buds were better. I am still piling on the salt to give anything flavour.
A nice easy start to Sunday with Mass at 10.30am. I find out that Annie’s daughter Holly will be having her kidney transplant about the same time as I have mine. We have a beer and sandwich lunch at the Royal Oak, followed by a dozy afternoon and another rugby watching evening.
Monday, 8 October 2007
My Chest Infection Bug is Identified
Monday 1st to Sunday 7th October 2007
To the RSCH on Monday morning for my blood test, with Tina driving as I still do not feel comfortable driving. The top stitch on my Hickman Line was taken out, the line flushed and the dressing changed. Ros Johnston checked my chest and sent me for an x-ray with the probability they would arrange for me to have a CT scan as well, including my sinuses. I am to go back on Wednesday so they can check progress. My blood results today are - Wbc: 3.9; Neuts: 2.6; Lymph: 0.9; Hbn: 10.6; PLT: 103. My weight today is 75.2 kgs.
I am sleeping most afternoons for at least a couple of hours, but on Tuesday I sleep a total of between four and five hours either side of lunch. This is remarkable as I am also sleeping well at night.
Back for another check up and blood tests at the RSCH on Wednesday. My neutrophils are down to 1.8 today. I find that I have an allergic reaction to the transparent plaster - IV 3000 - holding my Hickman Line and this is replaced with Tegaderm. I hope that is ok. The CT scan has been requested but it may take a couple of weeks before I get it.
Jim Rodgers calls round on Thursday morning for coffee and a chat. We then have a walk up the High Street for some fresh air and find ourselves having a pint of Harveys in the New Inn. I can taste the beer! Before that I call Judith, Dr. Steve Devereux’s secretary, and am able to get a slot at the end of his clinic tomorrow as I am concerned about my cough, my tiredness and my loss of appetite, bearing in mind my oncoming transplant.
I drive to Kings on Friday for my pre-transplant session. (Tina drives home but gets the worst of the deal!) No one from the team is available when we arrive, but I eventually get some clarity about what blood samples are needed. I set the cat among the pigeons at the bloods room as they have no prior notice of the request, but the receptionist is as efficient as ever and soon sort things out. The funny thing is they are not trained to make use of Hickman Lines, so it is back to my arm. I am seen by Steve Devereux about 12.30pm. He is very attentive to my chest cough - upper respiratory tract infection actually - as this needs to be sorted out before going into the transplant procedure. He gets me a CT scan today on my sinuses - and full body for staging purposes. That’s much better than waiting two weeks or so! He is sympathetic to my appetite loss issues and takes me off Corsodyl and Nystatin (hurray!) but keeps me on Itroconozole (ugh!). He suggests I stop the Furosimide as well. He also explains that my tiredness is natural considering the heavy chemotherapy regime I have been on, the nasty chest cough, the medications and hospitalisations I have had over recent months. He does not need me to see Mansour or any of the team as it is only three weeks since the last time and the priority is to get my chest sorted out. I have a provisional appointment to see him again in two weeks. We leave much heartened and reassured by this session.
On our way home I get a call from Jason in the RSCH day unit telling me that the laboratory has found a bug in my last sputum sample and that it is sensitive to Ciprofloxacin. So we go straight down to Brighton, collect the prescription and call into Asda to get it dispensed. I am later told that the bug is Pseudomonas, one which is quite regularly found but specific to people who are immune suppressed.
I am catching up on my diaries of our breaks away this year and have two of them done by Sunday. Saturday and Sunday are Rugby World Cup quarter finals days - a good excuse to keep my feet up and ease my water retention problems! England confound the critics. Australia and New Zealand are both sent home early! We walk up the village on Saturday afternoon as Tina wanted to see the plot I have bought in the cemetery. She likes the position - it is facing west, against the old cemetery wall below a very healthy looking holly tree. I am very pleased this has worked out so well. On Sunday I have a late afternoon nap. Our dinners this weekend have been fillet steaks and pork fillets. They are tasty, but I am still off wine - unfortunately! Whilst I am still having coughing sessions, I think things are getting slightly better.
To the RSCH on Monday morning for my blood test, with Tina driving as I still do not feel comfortable driving. The top stitch on my Hickman Line was taken out, the line flushed and the dressing changed. Ros Johnston checked my chest and sent me for an x-ray with the probability they would arrange for me to have a CT scan as well, including my sinuses. I am to go back on Wednesday so they can check progress. My blood results today are - Wbc: 3.9; Neuts: 2.6; Lymph: 0.9; Hbn: 10.6; PLT: 103. My weight today is 75.2 kgs.
I am sleeping most afternoons for at least a couple of hours, but on Tuesday I sleep a total of between four and five hours either side of lunch. This is remarkable as I am also sleeping well at night.
Back for another check up and blood tests at the RSCH on Wednesday. My neutrophils are down to 1.8 today. I find that I have an allergic reaction to the transparent plaster - IV 3000 - holding my Hickman Line and this is replaced with Tegaderm. I hope that is ok. The CT scan has been requested but it may take a couple of weeks before I get it.
Jim Rodgers calls round on Thursday morning for coffee and a chat. We then have a walk up the High Street for some fresh air and find ourselves having a pint of Harveys in the New Inn. I can taste the beer! Before that I call Judith, Dr. Steve Devereux’s secretary, and am able to get a slot at the end of his clinic tomorrow as I am concerned about my cough, my tiredness and my loss of appetite, bearing in mind my oncoming transplant.
I drive to Kings on Friday for my pre-transplant session. (Tina drives home but gets the worst of the deal!) No one from the team is available when we arrive, but I eventually get some clarity about what blood samples are needed. I set the cat among the pigeons at the bloods room as they have no prior notice of the request, but the receptionist is as efficient as ever and soon sort things out. The funny thing is they are not trained to make use of Hickman Lines, so it is back to my arm. I am seen by Steve Devereux about 12.30pm. He is very attentive to my chest cough - upper respiratory tract infection actually - as this needs to be sorted out before going into the transplant procedure. He gets me a CT scan today on my sinuses - and full body for staging purposes. That’s much better than waiting two weeks or so! He is sympathetic to my appetite loss issues and takes me off Corsodyl and Nystatin (hurray!) but keeps me on Itroconozole (ugh!). He suggests I stop the Furosimide as well. He also explains that my tiredness is natural considering the heavy chemotherapy regime I have been on, the nasty chest cough, the medications and hospitalisations I have had over recent months. He does not need me to see Mansour or any of the team as it is only three weeks since the last time and the priority is to get my chest sorted out. I have a provisional appointment to see him again in two weeks. We leave much heartened and reassured by this session.
On our way home I get a call from Jason in the RSCH day unit telling me that the laboratory has found a bug in my last sputum sample and that it is sensitive to Ciprofloxacin. So we go straight down to Brighton, collect the prescription and call into Asda to get it dispensed. I am later told that the bug is Pseudomonas, one which is quite regularly found but specific to people who are immune suppressed.
I am catching up on my diaries of our breaks away this year and have two of them done by Sunday. Saturday and Sunday are Rugby World Cup quarter finals days - a good excuse to keep my feet up and ease my water retention problems! England confound the critics. Australia and New Zealand are both sent home early! We walk up the village on Saturday afternoon as Tina wanted to see the plot I have bought in the cemetery. She likes the position - it is facing west, against the old cemetery wall below a very healthy looking holly tree. I am very pleased this has worked out so well. On Sunday I have a late afternoon nap. Our dinners this weekend have been fillet steaks and pork fillets. They are tasty, but I am still off wine - unfortunately! Whilst I am still having coughing sessions, I think things are getting slightly better.
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