I really tried to get as much sleep as possible, so I did not see "the apprentice". The nights and days are a round of constant interruption. I will try again tonight to catch up on some.sleep
Some of my symptoms are cyclic, for example the burning hands and feet peak between 11 and 4, and then subside back to painful but tolerable.The diarrhoea is making a comeback sadly. It too seems to peak in the early evening. I did have a ten hour break between 5am and 5pm. I hope I get the same kind of break overnight.
Rose came to visit again, and we actually managed to do some crossword clues.
- Posted using BlogPress from my iPad
Thursday, 30 June 2011
Wednesday, 29 June 2011
Blogger or I made a mistake
I just submitted today's post, and for some reason yesterday's seemed to have disappeared, yet I know it submitted OK because I got comments.
Apologies if you subscribe and got "T+5" twice.
Apologies if you subscribe and got "T+5" twice.
T+6: I need to sleep!
The diarrhoea and the number of IV drugs are still disrupting my sleep patterns, but I hope to get some good chunks tonight be because ...
The loperamide is quite effective against diarrhoea. I can last 4 or 5 hours using it. I am still taking the Buscopan to stop the cramps, so it looks like these drugs will enable me to make it through the next week or so until the cells engraft.
The oedema worsens. I have about 6kg of retained water in me. It has badly affected then palms of my hands and the soles of me feet, which are also affected directly by the cyclosporine (the immuno-suppressant). My hands and feet feel like they are being permanently scalded in hot water! They are going to give me a special kind of neuro pain killer that only affects nerves, but it takes 3 days to build up. In the meantime, I cool them down with wet paper towels!
Rose came to visit, and my improved wellbeing enabled us to attempt a crossword, but without much success I'm sorry to say.
This period of my treatment is like crossing a wide river in a raft ... at night. Then there is the climb at the other side!
- Posted using BlogPress from my iPad
The loperamide is quite effective against diarrhoea. I can last 4 or 5 hours using it. I am still taking the Buscopan to stop the cramps, so it looks like these drugs will enable me to make it through the next week or so until the cells engraft.
The oedema worsens. I have about 6kg of retained water in me. It has badly affected then palms of my hands and the soles of me feet, which are also affected directly by the cyclosporine (the immuno-suppressant). My hands and feet feel like they are being permanently scalded in hot water! They are going to give me a special kind of neuro pain killer that only affects nerves, but it takes 3 days to build up. In the meantime, I cool them down with wet paper towels!
Rose came to visit, and my improved wellbeing enabled us to attempt a crossword, but without much success I'm sorry to say.
This period of my treatment is like crossing a wide river in a raft ... at night. Then there is the climb at the other side!
- Posted using BlogPress from my iPad
Tuesday, 28 June 2011
T+5: Oedema
I guess I have settled into a routine, and although it is not pleasant it is bearable. We humans are nothing if not adaptable!
Sleep deprivation is a key element. I have not had more then an hour's contiguous sleep, and I am unlikely to do better much before the donor cells engraft, which is at least another 7 days.
On the plus side, my stool samples came back negative for any bugs, including C-DIFF, so they have at last given me some loperamide (Immodium) to slow down the diarrhoea. Even so, there are sufficient procedures to keep me interrupted most of the night.
As the title suggests, I am still retaining fluid, pretty much evenly distributed, and my hands and feet have become very "sensitive" (it hurts to put my hands in hot water). My food regime is down to just yoghurt and ice cream, because my mouth has become very dry and the nausea puts me off eating anyway.
Rose came to visit, but I was again not such good company. It is nice to have her in the room to doze off with! The other day she brought her laptop so we could sync some photos. These are some of our early pre-digital photos that we got digitised by a bureau. It is not outrageously expensive, and it is so nice to see the old pictures.
This is a picture of the Vieux Bassin in Honfleur (France), with Rose very decorously in the foreground taken in 2000.
Honfleur is a beautiful town, with many good restaurants. It is funny to think that we would have paid for this trip in French Francs!
- Posted using BlogPress from my iPad
Sleep deprivation is a key element. I have not had more then an hour's contiguous sleep, and I am unlikely to do better much before the donor cells engraft, which is at least another 7 days.
On the plus side, my stool samples came back negative for any bugs, including C-DIFF, so they have at last given me some loperamide (Immodium) to slow down the diarrhoea. Even so, there are sufficient procedures to keep me interrupted most of the night.
As the title suggests, I am still retaining fluid, pretty much evenly distributed, and my hands and feet have become very "sensitive" (it hurts to put my hands in hot water). My food regime is down to just yoghurt and ice cream, because my mouth has become very dry and the nausea puts me off eating anyway.
Rose came to visit, but I was again not such good company. It is nice to have her in the room to doze off with! The other day she brought her laptop so we could sync some photos. These are some of our early pre-digital photos that we got digitised by a bureau. It is not outrageously expensive, and it is so nice to see the old pictures.
This is a picture of the Vieux Bassin in Honfleur (France), with Rose very decorously in the foreground taken in 2000.
Honfleur is a beautiful town, with many good restaurants. It is funny to think that we would have paid for this trip in French Francs!
- Posted using BlogPress from my iPad
Monday, 27 June 2011
T+4: Getting the drugs right
I had a terrible night. The diarrhoea continued unabated, and the attendant stomach cramps were bad. Furthermore, my temperature has spiked - I have an infection. They took blood cultures right away, and started me on Meropenem. They also booked a chest Xray just to check it is all clear.
Today my temperature continues to be above 38, and I have had a few rigor attacks (shivering). They are giving me almost all my meds IV, and one of the lumens in my PICChas blocked. Fortunately they have a chemical to unblock it, and it worked.
The rigor attacks are bad, because they exacerbate the diarrhoea! Talking of which, it has changed a bit, I hope for the better. The frequency may have dropped to 2 hours. I am cautiously optimistic.
However, having said all this, when the drugs are working I can get comfortable for a few hours. The chest Xray was clear.
Rose came again to visit, but all I did was sleep really. It is still a comfort to haver in the room with me for a few hours.
- Posted using BlogPress from my iPad
Today my temperature continues to be above 38, and I have had a few rigor attacks (shivering). They are giving me almost all my meds IV, and one of the lumens in my PICChas blocked. Fortunately they have a chemical to unblock it, and it worked.
The rigor attacks are bad, because they exacerbate the diarrhoea! Talking of which, it has changed a bit, I hope for the better. The frequency may have dropped to 2 hours. I am cautiously optimistic.
However, having said all this, when the drugs are working I can get comfortable for a few hours. The chest Xray was clear.
Rose came again to visit, but all I did was sleep really. It is still a comfort to haver in the room with me for a few hours.
- Posted using BlogPress from my iPad
Sunday, 26 June 2011
T+3: It continues
Yesterday evening I did feel a little better, but then vomited my dinner. I passes a fitful night with the diarrhoea and cramps, but amazingly managed to get some sleep.
This morning things are, if anything, worse. This is definitely the worse diarrhoea I ever had, including the previous episodes documented in this blog. The cramps are a constant companion. The drug Buscopan does help with the cramps, but it does not last 6 hours.
I am retaining fluid, and not passing enough through my kidneys, so they have put me on a permanent fluid drip. Of course, it probably means I will retain more fluid, bit at least it gives me a chance of exercising my kidneys.
I just tried to take some codeine orally and promptly vomited, so I am also getting some IV cyclizine which is an anti-sickness drug. They are also going to switch more of my oral medication to IV. Things are a bit out of kilter right now!
Rose came to visit, but I am not much company. Apart from Rose, I do not think I would like to have any visitors for a few days - best wait until I am a bit better.
- Posted using BlogPress from my iPad
This morning things are, if anything, worse. This is definitely the worse diarrhoea I ever had, including the previous episodes documented in this blog. The cramps are a constant companion. The drug Buscopan does help with the cramps, but it does not last 6 hours.
I am retaining fluid, and not passing enough through my kidneys, so they have put me on a permanent fluid drip. Of course, it probably means I will retain more fluid, bit at least it gives me a chance of exercising my kidneys.
I just tried to take some codeine orally and promptly vomited, so I am also getting some IV cyclizine which is an anti-sickness drug. They are also going to switch more of my oral medication to IV. Things are a bit out of kilter right now!
Rose came to visit, but I am not much company. Apart from Rose, I do not think I would like to have any visitors for a few days - best wait until I am a bit better.
- Posted using BlogPress from my iPad
Saturday, 25 June 2011
T+2: Feeling terrible
The effects of the transplant and the cyclosporine are hammering home. I have very bad diarrhoea, with bad abdominal cramps, and I have a more ore less permanent headache. On top of this my body is retaining fluid.
On the plus side, my mouth is still in reasonable shape, although they tell me it will get worse. I am starting to get a bit nauseous too, but managed most of my breakfast. Lunch was less successful.
They gave me Buscopan to help with the stomach cramps, and codeine for the headaches, and in the afternoon I felt a little better, and got some sleep.
The doctor did not seem too concerned with my symptoms, and said I was doing OK for this stage of the treatment.
One day at at a time eh!
- Posted using BlogPress from my iPad
On the plus side, my mouth is still in reasonable shape, although they tell me it will get worse. I am starting to get a bit nauseous too, but managed most of my breakfast. Lunch was less successful.
They gave me Buscopan to help with the stomach cramps, and codeine for the headaches, and in the afternoon I felt a little better, and got some sleep.
The doctor did not seem too concerned with my symptoms, and said I was doing OK for this stage of the treatment.
One day at at a time eh!
- Posted using BlogPress from my iPad
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