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.
Tuesday 23 October 2007
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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