3:45am.
Just been woken up by Loudmouth Linda's evil sidekick: Warbling Wendy.
Since yesterday I've noticed that the great Double L has fallen silent. Now, perhaps she finally did get that help she was after, perhaps she lost her voice, or maybe she's been surreptitiously removed. Either way, her mysterious protégé has apparently now risen to the task of her replacement. Wendy (not her real name, I'm just too lazy to find out) has a more limited approach to sound-pollution. Averaging a strict yell-a-minute when in full-voice she has a thin reedy voice with an operatic vibrato. 9 times out of 10 she goes for the classic "Help!" but if you're lucky she'll throw in a "Please Someone Help Me" to break up the monotony.
She's a game player though, this Wendy, and she'll occasionally save up some "Help's" then let them all go in a great wave of shouting. Cunning.
(Author's note: for the first time ever she has just shouted "Harry!", just to spoil my writing I am sure. Damn it, now she's "Sorry Harry!" - I'm going to ignore this new ploy... no wait... phew, we're back to "Help").
And now that I've got that off my chest...
The ultrasound scan was very positive - they said it was all very good condition from what they could see. So now I'm really just waiting for *some* movement in the right direction of my LFTs (blood test numbers) by Monday, or else it's the dreaded biopsy for me.
I had a brilliant evening, with my friend Elias coming round. We snuck out and went down the road to the night-hotspot that is Camberwell and had a really nice Chinese meal. My appetite is returning but not quite there - I only managed 2 crispy duck pancakes and a couple of small bowls of rice with sweet-sour king prawns and chicken in black-bean sauce. But nevertheless, mmmmm!
Wendy's still at it, so I won't sleep for a while yet, but maybe on a Sunday I'll be allowed the odd half-hour lie-in? You can only hope...
Sunday, February 22, 2009
Saturday, February 21, 2009
Day 16 - More disappointment
I'm being kept in, again. My temperature has been perfectly fine for the past 24 hours so I think they have ruled out the possibility that there is a problem with that. Unfortunately my AST blood level is still remaining stubbornly high, so the medics had a meeting and decided they want me to remain in until at least Monday. If it hasn't come down over the weekend then they will have to do a liver biopsy. That essentially involves sedating me a little, putting lots of local anaesthetic in one side of my abdomen, and inserting what amounts to a very thin apple-corer into my side into the liver to remove a small sample.
In between the last paragraph and this I've just had some explanation (this is all very up-to-date!). I'm being sent for an ultrasound scan which will look at the flow of blood around my liver. They want to examine the 'patency' of my blood vessels in the liver (the extent to which they are open and free-flowing). If there are issues with that (which there have not been in previous ultrasounds), or if the AST-levels remain the same (not dangerously high but just stubbornly not normalising), then a liver biopsy will enable them to have a look at the vessel structure under the microscope.
There is a possibility that the reason things are not normalising is that I am experiencing very mild rejection of my new liver, and would therefore have to increase my steroid and immunosuppression dosage for the time being.
Further updates after the scan. This is all slightly concerning, but the doctors don't seem to be worried that it is a major problem at the moment, just something that will need attending to before I go home. Shame really, as I'm well enough now that hospital is beginning to get very boring indeed!
In between the last paragraph and this I've just had some explanation (this is all very up-to-date!). I'm being sent for an ultrasound scan which will look at the flow of blood around my liver. They want to examine the 'patency' of my blood vessels in the liver (the extent to which they are open and free-flowing). If there are issues with that (which there have not been in previous ultrasounds), or if the AST-levels remain the same (not dangerously high but just stubbornly not normalising), then a liver biopsy will enable them to have a look at the vessel structure under the microscope.
There is a possibility that the reason things are not normalising is that I am experiencing very mild rejection of my new liver, and would therefore have to increase my steroid and immunosuppression dosage for the time being.
Further updates after the scan. This is all slightly concerning, but the doctors don't seem to be worried that it is a major problem at the moment, just something that will need attending to before I go home. Shame really, as I'm well enough now that hospital is beginning to get very boring indeed!
Friday, February 20, 2009
Day 15 - Feeling better about it all
Well, I've cheered up no end now. At 3pm my temperature was a perfectly healthy 37.0, and I haven't felt like I'm getting ill at all. To be honest my theory is that my body is being a little inadequate about regulating its own temperature. For example last night I was sat in a very hot room before they measured my temperature at 37.7, and it returned to normal this morning when I woke up in a nice cool room. After my hot shower it went back to 37.5, then after a relaxing afternoon in my room with the window open and a fresh breeze it was back to 37.0.
Ok, so it should be doing a better job at maintaining something healthy, but I don't believe it's indicative of infection. I'm hoping to get a clean bill of health tomorrow morning, but if the test results have not come back yet then I wouldn't be at all surprised if they say stay until Monday.
Dad came over at 4 today to cheer me up, although to be honest I'd already taken it on the chin and cheered myself up. We had a lovely chat, and then snuck out of the hospital to walk all the way down the road to Nandos chicken restaurant where I had an absolutely delicious meal. I now feel happily full, and it was lovely to have escaped for a bit (however naughty that may have been!)
They've started me on another drug - acyclovir. It's an antiviral treatment to deal with the raised level of EBV virus. I'm taking that 5 times a day for about a week probably, just to add to the mix of different substances!
Fingers crossed then for tomorrow.
Ok, so it should be doing a better job at maintaining something healthy, but I don't believe it's indicative of infection. I'm hoping to get a clean bill of health tomorrow morning, but if the test results have not come back yet then I wouldn't be at all surprised if they say stay until Monday.
Dad came over at 4 today to cheer me up, although to be honest I'd already taken it on the chin and cheered myself up. We had a lovely chat, and then snuck out of the hospital to walk all the way down the road to Nandos chicken restaurant where I had an absolutely delicious meal. I now feel happily full, and it was lovely to have escaped for a bit (however naughty that may have been!)
They've started me on another drug - acyclovir. It's an antiviral treatment to deal with the raised level of EBV virus. I'm taking that 5 times a day for about a week probably, just to add to the mix of different substances!
Fingers crossed then for tomorrow.
LEAVING CANCELLED!
30 minutes from my agreed pickup time I've just had the doctors tell me they want me to stay for 24hours more, and maybe beyond that.
Last night I had a temperature of 37.6. It was normal this morning (36.8), but just now it was 37.5. My protestations that I have just had a hot shower were ignored. Apparently my EBV virus level (glandular fever to you and me) has risen just slightly. Almost everyone carries it in their body dormant. By itself that wouldn't be enough to keep me in, but with the marginal temperature that's it.
I've taken lots of deep breaths, dried my eyes a bit and tried to not be too argumentative, but I am deeply disappointed, of course. So near, and yet, so far.
Last night I had a temperature of 37.6. It was normal this morning (36.8), but just now it was 37.5. My protestations that I have just had a hot shower were ignored. Apparently my EBV virus level (glandular fever to you and me) has risen just slightly. Almost everyone carries it in their body dormant. By itself that wouldn't be enough to keep me in, but with the marginal temperature that's it.
I've taken lots of deep breaths, dried my eyes a bit and tried to not be too argumentative, but I am deeply disappointed, of course. So near, and yet, so far.
Day 15 - Leaving day & Multiplying Moaners
Well, finally! I've just finished my last breakfast-in-bed (the only real upside of hospital), and I'm just waiting for the new linen to arrive on the ward so I can get a new towel to shower and get ready to go.
I didn't sleep very well last night. It was very noisy on the ward. Loudmouth Linda spent the entire night crying and weeping, and was keeping me awake even though my door was closed and so, I believe, was hers. This morning she has been joined by another voice who warbles (like an aging opera singer) "Help!" at almost exactly 30-second intervals. Linda herself, clearly quite tired, has ceased to make any distinct words, and is now making sort of animal whining noises.
I've got to see the pharmacist this morning to get my 2-weeks supply of drugs to go home with. In addition to yesterday's list I'll *also* be on Cocodamol (painkiller: paracetamol/codeine mix), and Aspirin (as an anti-clotting agent). I also have to see the clinical trial team for an examination to ensure I'm still on course for the trial. They're really quite excited about me as I'm progressing toward being the first patient in the whole of the UK on this trial (although there are many already on it in the USA). I also have to meet with the nutritionist to discuss what food and supplements I should be having at home. I'm pretty confident I already know about this but it does no harm to hear it again.
I'm going to miss some of the wonderful nurses here. They are some of the most wonderful, understanding, sympathetic, compassionate people I have ever met. I was thinking of getting them a box of chocolates but that seems a bit too easy and not enough. I'm going to give it some thought and get something more meaningful.
I'm *not* going to miss being woken up at 6:30am each morning with medication and observations (blood pressure, temperature, etc.). I definitely won't miss the several injections per day, nor the finger-pricks they do to test blood-sugar a few times per day.
I absolutely definitely will not miss the food. Dad has tantalised my tastebuds with the thought of chicken soup tonight. Wonderful!
Roll on the journey home.
I didn't sleep very well last night. It was very noisy on the ward. Loudmouth Linda spent the entire night crying and weeping, and was keeping me awake even though my door was closed and so, I believe, was hers. This morning she has been joined by another voice who warbles (like an aging opera singer) "Help!" at almost exactly 30-second intervals. Linda herself, clearly quite tired, has ceased to make any distinct words, and is now making sort of animal whining noises.
I've got to see the pharmacist this morning to get my 2-weeks supply of drugs to go home with. In addition to yesterday's list I'll *also* be on Cocodamol (painkiller: paracetamol/codeine mix), and Aspirin (as an anti-clotting agent). I also have to see the clinical trial team for an examination to ensure I'm still on course for the trial. They're really quite excited about me as I'm progressing toward being the first patient in the whole of the UK on this trial (although there are many already on it in the USA). I also have to meet with the nutritionist to discuss what food and supplements I should be having at home. I'm pretty confident I already know about this but it does no harm to hear it again.
I'm going to miss some of the wonderful nurses here. They are some of the most wonderful, understanding, sympathetic, compassionate people I have ever met. I was thinking of getting them a box of chocolates but that seems a bit too easy and not enough. I'm going to give it some thought and get something more meaningful.
I'm *not* going to miss being woken up at 6:30am each morning with medication and observations (blood pressure, temperature, etc.). I definitely won't miss the several injections per day, nor the finger-pricks they do to test blood-sugar a few times per day.
I absolutely definitely will not miss the food. Dad has tantalised my tastebuds with the thought of chicken soup tonight. Wonderful!
Roll on the journey home.
Thursday, February 19, 2009
Day 14 - Homeward bound tomorrow!
At last, the doctors have confirmed that I can go home tomorrow. They showed me the various blood test levels which have indeed been fluctuating, but have been settling down markedly in the last couple of days. In particular they are pleased that my INR (a measure of the blood's ability to clot) has returned to normal.
So I will be taken back to my flat in Finchley tomorrow morning by ambulance where I will pick up a few fresh clothes and then get collected by Dad or Carole to take me to Watford for a little while. I have a couple of meetings in the hospital before that, one of these is about nutrition and the other is about the clinical trial, but that's all, and they should be finished fairly promptly.
A very mildly disappointing piece of news is that the doctors think I will probably needs to remain on a low level of steroids for the rest of my life, as well as the immunosuppression. They said this is fairly routine for people who used to have PSC, but it is a shame nevertheless. I'm going to do some research in to this and find out more about it, as if it is avoidable I would certainly like to.
So I will be going home with the following drugs:
Tacrolimus - the main immunosuppressant drug to prevent rejection. In a few weeks due to the clinical trial this may be mixed with/replaced by a newer drug called Everolimus.
Prednisolone - a strong steroid, also used to prevent rejection.
Nystatin - an antifungal to be used while I my immune system is being strongly suppressed.
Omeprazole - effectively a strong antacid and method of buffering my stomach against some of the nasty effects of the steroid.
Oxycontin - a strong opiate painkiller
Paracetamol - an additional background painkiller
The levels of all these drugs will be reduced gradually over the next 3-6 months. Eventually I will be only on much lower doses of the immunosuppressant and the steroid.
The main drawbacks to these drugs are that I will always be more at risk of catching bacteria, viruses and fungal illnesses (particularly in the first few months). I am also at a very significantly increased lifetime risk of skin cancer, and to a lesser extent other cancers.
However, sensible precautions and a healthy lifestyle should help counter this. Don't be surprised if I seem to have turned in to a bit of a healthy lifestyle obsessive - I'm having to work against a raised risk of cancer that is nearly equivalent to smoking!
My exercise regime seems to be working well. I have been making sure I get a shorter walk at least once an hour, and I'm doing more gentle stretching. In combination with slightly higher levels of painkiller I can already feel things ease ever so slightly.
Right, lunchtime calls. More food intake is another priority!
So I will be taken back to my flat in Finchley tomorrow morning by ambulance where I will pick up a few fresh clothes and then get collected by Dad or Carole to take me to Watford for a little while. I have a couple of meetings in the hospital before that, one of these is about nutrition and the other is about the clinical trial, but that's all, and they should be finished fairly promptly.
A very mildly disappointing piece of news is that the doctors think I will probably needs to remain on a low level of steroids for the rest of my life, as well as the immunosuppression. They said this is fairly routine for people who used to have PSC, but it is a shame nevertheless. I'm going to do some research in to this and find out more about it, as if it is avoidable I would certainly like to.
So I will be going home with the following drugs:
Tacrolimus - the main immunosuppressant drug to prevent rejection. In a few weeks due to the clinical trial this may be mixed with/replaced by a newer drug called Everolimus.
Prednisolone - a strong steroid, also used to prevent rejection.
Nystatin - an antifungal to be used while I my immune system is being strongly suppressed.
Omeprazole - effectively a strong antacid and method of buffering my stomach against some of the nasty effects of the steroid.
Oxycontin - a strong opiate painkiller
Paracetamol - an additional background painkiller
The levels of all these drugs will be reduced gradually over the next 3-6 months. Eventually I will be only on much lower doses of the immunosuppressant and the steroid.
The main drawbacks to these drugs are that I will always be more at risk of catching bacteria, viruses and fungal illnesses (particularly in the first few months). I am also at a very significantly increased lifetime risk of skin cancer, and to a lesser extent other cancers.
However, sensible precautions and a healthy lifestyle should help counter this. Don't be surprised if I seem to have turned in to a bit of a healthy lifestyle obsessive - I'm having to work against a raised risk of cancer that is nearly equivalent to smoking!
My exercise regime seems to be working well. I have been making sure I get a shorter walk at least once an hour, and I'm doing more gentle stretching. In combination with slightly higher levels of painkiller I can already feel things ease ever so slightly.
Right, lunchtime calls. More food intake is another priority!
Wednesday, February 18, 2009
Day 13
I'm lying on my bed with a rather sore stomach at the moment. After some discussion with the Physio today I decided that what I needed to do was to increase my level of painkillers and then just try and do more gentle stretching and more short bursts of exercise instead of prolonged walks. As a result of that, however, my stomach feels rather painful, and that's even after all the extra painkiller injections...
Still, it's a new target for me now - to do a small piece of exercise every hour. I managed that pretty well this afternoon while my Dad and Carole were here. We had a great afternoon and discussed all sorts of plans for the future.
I also heard from the doctor that they have yet to make a definite call on my leaving at the end of this week. Apparently on the day of surgery a small liver biopsy did raise some mild concerns about the state of the organ, which is why they did so many scans and tests over the following days. My liver function blood-tests are getting back to normal levels slowly, but are still fluctuating, so taking in to account their initial concern they are being very cautious.
If they're not happy then they will keep me in and give me a liver biopsy on Friday or Monday. I'm not sure what would happen at that point, but I'm not going to get in to to detail unless the situation actually arises. Fingers crossed it's all fine.
I crossed off one of my important to-do tasks this morning, by writing the letter to my liver donor's family. I don't know any details about my donor, though I am allowed to find out age and sex. To be honest I'm unsure if I want to know anything just yet, as I don't really want to have a feeling that I'm going round with an alien lump of flesh inside me. As it stands it just feels completely like part of me, and maybe I'll keep it that way and find out nothing more. I can put off the decision for now - maybe I'll want to know in a few weeks.
It was a very hard letter to write as I don't know the people, or their relation to the donor. It was quite an emotional thing telling the story of my disease, and my mum's death, and how I've been doing for the last few years. When the transplant coordinator, and later Dad and Carole, had a read through it seemed to bring a tear to their eyes.
I'm going to hold on to it for a bit and re-read it in a few days when I'm out of hospital, but it's something I want to do sooner rather than later.
That's all from me for now - it's time for a short walk around the ward again. Tomorrow I might write a bit about some of the drugs I'm going to have to take for the next months and years.
Still, it's a new target for me now - to do a small piece of exercise every hour. I managed that pretty well this afternoon while my Dad and Carole were here. We had a great afternoon and discussed all sorts of plans for the future.
I also heard from the doctor that they have yet to make a definite call on my leaving at the end of this week. Apparently on the day of surgery a small liver biopsy did raise some mild concerns about the state of the organ, which is why they did so many scans and tests over the following days. My liver function blood-tests are getting back to normal levels slowly, but are still fluctuating, so taking in to account their initial concern they are being very cautious.
If they're not happy then they will keep me in and give me a liver biopsy on Friday or Monday. I'm not sure what would happen at that point, but I'm not going to get in to to detail unless the situation actually arises. Fingers crossed it's all fine.
I crossed off one of my important to-do tasks this morning, by writing the letter to my liver donor's family. I don't know any details about my donor, though I am allowed to find out age and sex. To be honest I'm unsure if I want to know anything just yet, as I don't really want to have a feeling that I'm going round with an alien lump of flesh inside me. As it stands it just feels completely like part of me, and maybe I'll keep it that way and find out nothing more. I can put off the decision for now - maybe I'll want to know in a few weeks.
It was a very hard letter to write as I don't know the people, or their relation to the donor. It was quite an emotional thing telling the story of my disease, and my mum's death, and how I've been doing for the last few years. When the transplant coordinator, and later Dad and Carole, had a read through it seemed to bring a tear to their eyes.
I'm going to hold on to it for a bit and re-read it in a few days when I'm out of hospital, but it's something I want to do sooner rather than later.
That's all from me for now - it's time for a short walk around the ward again. Tomorrow I might write a bit about some of the drugs I'm going to have to take for the next months and years.
Day 13 - Loudmouth Linda
What a delight this ward has become. Somewhere down the hall is a lady called Linda, apparently. Linda has brought a new and 'exciting' atmosphere to the ward with her constant yelling of "OH GOD PLEASE HELP ME, OH GOD, NOOOOO, PLEASE, SOMEBODY HELP ME, OH GOD, PLEASE PLEASE PLEASE" followed by a loud retching noise, then a long wailing cry with sobs, then start again from the beginning.
I'm afraid I don't have any sympathy as she is refusing to take any painkillers, refusing to talk to the nurses, and just shouting them down with more yelling. The nurses are clearly at their wits end. If my eavesdropping skills have not deserted me she also has a family who come in every so often, shout at and abuse the nurses then leave again.
What fun.
Anyway, apart from that I'm feeling pretty good. Just had a larger-than-normal breakfast after a decent night's sleep (apart from the occasional waking by Linda). I'm now self-medicating though there was some argument last night over whether the medication schedule I had been given accurately reflected the doctor's prescription. That'll be resolved this morning with a bit of luck.
More later...
I'm afraid I don't have any sympathy as she is refusing to take any painkillers, refusing to talk to the nurses, and just shouting them down with more yelling. The nurses are clearly at their wits end. If my eavesdropping skills have not deserted me she also has a family who come in every so often, shout at and abuse the nurses then leave again.
What fun.
Anyway, apart from that I'm feeling pretty good. Just had a larger-than-normal breakfast after a decent night's sleep (apart from the occasional waking by Linda). I'm now self-medicating though there was some argument last night over whether the medication schedule I had been given accurately reflected the doctor's prescription. That'll be resolved this morning with a bit of luck.
More later...
Tuesday, February 17, 2009
Olympic record post PSC-transplant!
I just read an amazing article about an olympic skiier who won bronze after PSC and a liver transplant. Ok, so to give you some idea of what an amazing recovery sounds like - this guy was out of hospital after *4 days*, and skiing again after 2 months.
Wow.
Now that is pretty inspiring stuff! The next time someone is about to tell me not to overdo it I refer you to the above article... (although it does actually make me want to scream when people do that - why would anyone think I would actively try and do myself harm???!?!?!?!?)
I think I'm going to talk to the physios again tomorrow to get some more ideas about how to relieve this extraordinary tightness in my abdomen - I couldn't stand up straight now even if I tried. Still, this is a good little reminder about setting goals, and not allowing yourself to be 'ill'.
Incidentally I am considering asking to stay in hospital until Friday as they want to see me in the outpatients clinic on Friday morning anyway, so it would save a lot of to-ing and fro-ing. More news as I decide.
Wow.
Now that is pretty inspiring stuff! The next time someone is about to tell me not to overdo it I refer you to the above article... (although it does actually make me want to scream when people do that - why would anyone think I would actively try and do myself harm???!?!?!?!?)
I think I'm going to talk to the physios again tomorrow to get some more ideas about how to relieve this extraordinary tightness in my abdomen - I couldn't stand up straight now even if I tried. Still, this is a good little reminder about setting goals, and not allowing yourself to be 'ill'.
Incidentally I am considering asking to stay in hospital until Friday as they want to see me in the outpatients clinic on Friday morning anyway, so it would save a lot of to-ing and fro-ing. More news as I decide.
Day 12 update
I'm feeling much better now, so that seems to have been an isolated couple of incidents this morning. None of the doctors seemed too concerned. They have set my new discharge date as Thursday 19th. The blood test levels are moving slowly in the right direction and they are happy enough that this will continue.
I have just had a long education session from one of the transplant coordinators regarding the drugs regimen that I will be on when I leave. They are going to start getting me to self-medicate under supervision for these last couple of days in hospital so that they can check I'm doing it right. There are a whole load of different drugs and the dosage is going to change quite a lot over the next couple of months as things settle down.
I've also learnt about what precautions to take with choice of food, how to look after my wound, and what the implications are for travel. Pretty much everything can be summarised as "be sensible, remember your immune system is weak". There is no such thing as a banned food, but anything which is more likely to contain bacteria is best avoided, particularly for the first 6 months.
I am going to have to come back to the clinic initially every week, probably on a Thursday. Fortunately this will be a dual-purpose visit: firstly for normal post-transplant monitoring, and secondly for clinical-trial monitoring. As the clinical trial is paid for by the drug company this means I will be able to take taxis back and forward to the hospital each time and claim it back.
I also learned today that because I had Primary Sclerosing Cholangitis in my old liver, and therefore had a more complicated type of transplant than most people, it means that I'm doing even better relative to most as the average ex-PSC patient is in hospital for several days more than the other transplant patients. So comparing myself to the record-breaking 8-days post surgery discharge that one of the nurses told me about isn't quite accurate - I'd like to think I'm still a record-breaker in my own special way!
I have just had a long education session from one of the transplant coordinators regarding the drugs regimen that I will be on when I leave. They are going to start getting me to self-medicate under supervision for these last couple of days in hospital so that they can check I'm doing it right. There are a whole load of different drugs and the dosage is going to change quite a lot over the next couple of months as things settle down.
I've also learnt about what precautions to take with choice of food, how to look after my wound, and what the implications are for travel. Pretty much everything can be summarised as "be sensible, remember your immune system is weak". There is no such thing as a banned food, but anything which is more likely to contain bacteria is best avoided, particularly for the first 6 months.
I am going to have to come back to the clinic initially every week, probably on a Thursday. Fortunately this will be a dual-purpose visit: firstly for normal post-transplant monitoring, and secondly for clinical-trial monitoring. As the clinical trial is paid for by the drug company this means I will be able to take taxis back and forward to the hospital each time and claim it back.
I also learned today that because I had Primary Sclerosing Cholangitis in my old liver, and therefore had a more complicated type of transplant than most people, it means that I'm doing even better relative to most as the average ex-PSC patient is in hospital for several days more than the other transplant patients. So comparing myself to the record-breaking 8-days post surgery discharge that one of the nurses told me about isn't quite accurate - I'd like to think I'm still a record-breaker in my own special way!
Day 12 - Pain in the morning
Not a nice morning so far. I've just had a really good night's sleep - around 8 hours. However at 6am I woke up with quite bad abdominal pain and had to get a top-up painkiller injection. I fell asleep again and woke up an hour later feeling fine, but then the pain started again around 7:45 and got worse for the next 30 mins. It comes in waves and is a mix of a sort of stomach ache with heartburn. It's in an odd position - not really over the wound where the pain has been before. I've just had another painkiller injection and it's dulled it a bit, though I'm still definitely uncomfortable. I'm hoping the next wave of pain isn't too bad.
Hmm. Doctors coming round within the next hour so I'm going to report to them and will report back...
Otherwise yesterday was very good. Once I'd got over the minor disappointment of a changed leaving day, I sat up out of bed most of the day and went for quite a few walks. I had a nice afternoon with Dad and Carole, and then in the evening my old school friend Alex came round and we went for dinner in the canteen. I ate a little more than usual and felt good about it!
Today is a little odd. As everyone thought I was going home today I have nobody planning to visit! So if you're reading this and fancy popping in, then please do feel free...
Hmm. Doctors coming round within the next hour so I'm going to report to them and will report back...
Otherwise yesterday was very good. Once I'd got over the minor disappointment of a changed leaving day, I sat up out of bed most of the day and went for quite a few walks. I had a nice afternoon with Dad and Carole, and then in the evening my old school friend Alex came round and we went for dinner in the canteen. I ate a little more than usual and felt good about it!
Today is a little odd. As everyone thought I was going home today I have nobody planning to visit! So if you're reading this and fancy popping in, then please do feel free...
Monday, February 16, 2009
Update: moved rooms & maybe wednesday to go?
Mini update: just been moved to room 21 from the large but annoyingly remote room 26. It's smaller but better-placed.
Also there is a note on the main hospital whiteboard saying I am currently estimated to go on Wednesday 18th. However, that's not quite what the doctor said to me, so let's take it with a pinch of salt.
Also there is a note on the main hospital whiteboard saying I am currently estimated to go on Wednesday 18th. However, that's not quite what the doctor said to me, so let's take it with a pinch of salt.
Morning of Day 11 - Not going home tomorrow - Boo!
Disappointing way to start the day. I've just been told I'm not going home tomorrow after all. One of the liver function blood tests they watch is Aspartate transaminase or AST, and they were hoping it would have returned to completely normal levels by now. However mine has not quite come down all the way to normal yet, so they don't want me to go until they've been able to monitor it and are sure that it is going to get there. It suggests that there was some minor liver damage during the surgery - not at all uncommon - and they want to make sure it heals up properly.
So, might be in here a few more days yet sadly. I'm not going to get hung up over a specific date and I intend to just go with the flow and keep doing my best to get better while I'm in here. Better be safe than sorry anyway. The boredom is more likely to creep back in now though, so visitors feel free to keep coming.
Apart from that yesterday was great. They took the last little fluid bag off me last night, so I have absolutely no tubes, needles, pipes or bags in me anywhere. The wound is healing nicely, and I'm getting increasingly mobile. I had 10 visitors yesterday - my room got a bit crowded at times. Was lovely to see everyone though.
More news as I get it...
So, might be in here a few more days yet sadly. I'm not going to get hung up over a specific date and I intend to just go with the flow and keep doing my best to get better while I'm in here. Better be safe than sorry anyway. The boredom is more likely to creep back in now though, so visitors feel free to keep coming.
Apart from that yesterday was great. They took the last little fluid bag off me last night, so I have absolutely no tubes, needles, pipes or bags in me anywhere. The wound is healing nicely, and I'm getting increasingly mobile. I had 10 visitors yesterday - my room got a bit crowded at times. Was lovely to see everyone though.
More news as I get it...
Sunday, February 15, 2009
Brief update
Good news - the doctor just told me that I can have the nurse remove my little plastic pouch as my drain wound is basically dry now. Also they said not to worry about getting painkillers for breakthrough pain at home, and also that they are confident that the education session won't be something that stops me from going home on Tuesday.
In slightly odd news I did have a really strong urge to throw up this morning after breakfast but I decided not to give in and just relaxed and it went away. Feeling just fine now!
In slightly odd news I did have a really strong urge to throw up this morning after breakfast but I decided not to give in and just relaxed and it went away. Feeling just fine now!
End of Day 9
Brilliant stuff! I just had my last IV injection through my cannula and it has been removed. That means I have no tubes or needles or any kind left poking in to me anywhere, hooray! My plastic bag over the hole where the last drain was has basically only got a few tiny mililetres of liquid - and most of that was from yesterday, so I'm confident they'll remove the bag and just leave a normal dressing fairly soon.
The ward keep trying to bring me lunch and dinner despite the fact I didn't order any, thinking they must have lost the order. I keep sending it away and claiming my friends and family are bringing in food for me. Today this was true actually. Dad and Carole brought a delicious cheese bagel with grapes and a banana for lunch, and then I walked with them all the way to the far corner of the hospital to a costa coffee sat there for a bit and then walked back, including up one flight of stairs. I'll admit it was really hard, but very satisfying!
This evening Jane and Cecile arrived and we had our Singles Valentines Night. After my exertions of earlier they found a wheelchair and pushed me down to the restaurant where, having turned away yet more food from the ward, we had a pleasant meal (inifitely better than ward food), and then came back upstairs for a nice chat.
This evening I watched Harry Potter - Chamber of Secrets while catching up with some friends on email and MSN on my laptop, and until the last antibiotic injection when they agreed to remove the cannula.
In other good news today the doctor agreed that my kidneys basically seemed to be doing fine, so I can stop peeing in bottles for it to be measured, and just use a loo like a normal human being.
So tomorrow I've got a whole load of visitors coming, which is brilliant. Kathy is coming around lunchtime and I'm going to get her to come with me to get a sandwich (again, to avoid ward food), and then I've got several other friends all the way until the evening, when I'm going to persuade some more friends to come with me to the restaurant for food.
If I can keep that up all of Monday as well then I can avoid any more disgustingness - like today's gelatinous MSG'd globules of 'sauce' with incinerated tasteless chicken remenetants and watery-destroyed veg along with thrice-overcooked peas and ultra-dry roast potatoes that I took two mouthfuls from before ringing Dad and Carole to bring a swift alternative!
The only potential cloud on the horizon is if the transplant coordinators don't give me this drug training session on Monday earlyish then I won't be allowed to go home - they have to sign off that I'm capabable of self-medicating before letting me out. I will chase it up tomorrow.
Fingers crossed, but frankly I'm feeling great about life at the moment! It's simple thing like being able to go to the loo, and palatable food, that you never realise how much you'll miss :)
Oh and still (touch wood), the itch is basically gone. I'm just waiting for the last of the jaundice to fade - willing that to happen soon now!
The ward keep trying to bring me lunch and dinner despite the fact I didn't order any, thinking they must have lost the order. I keep sending it away and claiming my friends and family are bringing in food for me. Today this was true actually. Dad and Carole brought a delicious cheese bagel with grapes and a banana for lunch, and then I walked with them all the way to the far corner of the hospital to a costa coffee sat there for a bit and then walked back, including up one flight of stairs. I'll admit it was really hard, but very satisfying!
This evening Jane and Cecile arrived and we had our Singles Valentines Night. After my exertions of earlier they found a wheelchair and pushed me down to the restaurant where, having turned away yet more food from the ward, we had a pleasant meal (inifitely better than ward food), and then came back upstairs for a nice chat.
This evening I watched Harry Potter - Chamber of Secrets while catching up with some friends on email and MSN on my laptop, and until the last antibiotic injection when they agreed to remove the cannula.
In other good news today the doctor agreed that my kidneys basically seemed to be doing fine, so I can stop peeing in bottles for it to be measured, and just use a loo like a normal human being.
So tomorrow I've got a whole load of visitors coming, which is brilliant. Kathy is coming around lunchtime and I'm going to get her to come with me to get a sandwich (again, to avoid ward food), and then I've got several other friends all the way until the evening, when I'm going to persuade some more friends to come with me to the restaurant for food.
If I can keep that up all of Monday as well then I can avoid any more disgustingness - like today's gelatinous MSG'd globules of 'sauce' with incinerated tasteless chicken remenetants and watery-destroyed veg along with thrice-overcooked peas and ultra-dry roast potatoes that I took two mouthfuls from before ringing Dad and Carole to bring a swift alternative!
The only potential cloud on the horizon is if the transplant coordinators don't give me this drug training session on Monday earlyish then I won't be allowed to go home - they have to sign off that I'm capabable of self-medicating before letting me out. I will chase it up tomorrow.
Fingers crossed, but frankly I'm feeling great about life at the moment! It's simple thing like being able to go to the loo, and palatable food, that you never realise how much you'll miss :)
Oh and still (touch wood), the itch is basically gone. I'm just waiting for the last of the jaundice to fade - willing that to happen soon now!
Saturday, February 14, 2009
Day 8 and morning of day 9
More great progress! I managed to get up and have a shower yesterday which, while being exhausting and painful, was a real accomplishment and much better than just sponging myself down on the edge of the bed as I have before. I then also got told that the doctors were so pleased with my progress that they now want me to be discharged on Tuesday 17th rather than Friday 20th.
The other wonderful thing was finally have my last drain tube removed from my abdomen. There had been quite a bit of fluid coming out still so they'd held off, but the little plastic bag they've replaced it with temporarily has hardly filled at all so it's already healing up nicely. It's made my much more mobile.
I had lots of visitors last night, and while they were here I managed to walk all the way from my room to the hospital restaurant on the ground floor (albeit taking the lift). It was pretty tough, but I was really pleased to be able to manage it.
I've been doing my best to eat better but I've come to the firm conclusion that absolutely everything they produce here is absolutely disgusting. They even completely ruined an egg salad yesterday and as for the fish and chips even my brother chewed thoughtfully and said "wow, that really is foul". I'm now going to get people to bring in food, or go down to the shop or restaurant to eat as the quality there is at least a little better. I'm waiting for the nurses to start telling me off for not ordering any food, but I'm getting rebellious!
I had an excellent night's sleep last night - best so far. I've moved rooms (due to some room-swapping the ward needed to accomodate new patients), and I'm now in a bigger private room with a bathroom that isn't shared - room 26.
This morning I've managed, despite not having quite enough painkiller, to walk down and up two flights of stairs. When I've managed to top up the pain meds then I reckon I might be even more ambitious later. The Physios are essentially signing me off as sufficiently mobilised to leave hospital now, but I'm going to keep challenging myself before I leave on Tuesday.
I have my last antibiotic treatment last night, which will mean no more intravenous medicines, though I'll still need intramuscular jabs (with the very tiny needle) for heparin (blood-clotter) and painkiller topups (oxy-codine). Hopefully I can negotiate slightly stronger every-day painkillers to reduce my dependence on those injections.
Excellent, between that last paragraph and this I just got another jab actually, though the nurse had to zoom off after quicky as there's a *really* annoying woman just up the coridoor who spends her whole day wailing and whining and calling out (she apparently hasn't worked out the use of the call button for the last 30 times). She is clearly attention-seeking. Who does that? :)
The other wonderful thing was finally have my last drain tube removed from my abdomen. There had been quite a bit of fluid coming out still so they'd held off, but the little plastic bag they've replaced it with temporarily has hardly filled at all so it's already healing up nicely. It's made my much more mobile.
I had lots of visitors last night, and while they were here I managed to walk all the way from my room to the hospital restaurant on the ground floor (albeit taking the lift). It was pretty tough, but I was really pleased to be able to manage it.
I've been doing my best to eat better but I've come to the firm conclusion that absolutely everything they produce here is absolutely disgusting. They even completely ruined an egg salad yesterday and as for the fish and chips even my brother chewed thoughtfully and said "wow, that really is foul". I'm now going to get people to bring in food, or go down to the shop or restaurant to eat as the quality there is at least a little better. I'm waiting for the nurses to start telling me off for not ordering any food, but I'm getting rebellious!
I had an excellent night's sleep last night - best so far. I've moved rooms (due to some room-swapping the ward needed to accomodate new patients), and I'm now in a bigger private room with a bathroom that isn't shared - room 26.
This morning I've managed, despite not having quite enough painkiller, to walk down and up two flights of stairs. When I've managed to top up the pain meds then I reckon I might be even more ambitious later. The Physios are essentially signing me off as sufficiently mobilised to leave hospital now, but I'm going to keep challenging myself before I leave on Tuesday.
I have my last antibiotic treatment last night, which will mean no more intravenous medicines, though I'll still need intramuscular jabs (with the very tiny needle) for heparin (blood-clotter) and painkiller topups (oxy-codine). Hopefully I can negotiate slightly stronger every-day painkillers to reduce my dependence on those injections.
Excellent, between that last paragraph and this I just got another jab actually, though the nurse had to zoom off after quicky as there's a *really* annoying woman just up the coridoor who spends her whole day wailing and whining and calling out (she apparently hasn't worked out the use of the call button for the last 30 times). She is clearly attention-seeking. Who does that? :)
Friday, February 13, 2009
Day 7
Another good day today. I've found that one of the keys is to consistently opt for stronger painkillers - that lets me eat and move around much more comfortably which brings other benefits in turn.
In the morning I went for another ultrasound, which was very successful and everyone was pleased with the results. Didn't manage much breakfast, but did better with lunch having a vaguely normal small-ish portion. A doctor came to see me and said he was happy with my progress and that I would probably have my drain tube out very soon to be replaced by a bag instead so that it could start healing up naturally.
The physio came to see me after lunch and we went for a relatively long walk - all the way out of the ward and part of the way along the corridor, then back again. I then had a visit from my aunt, cousin, and second-cousin which was great, then had a meeting with a few people to talk about my progress. Firstly there was the clinical trial team who came to assess whether I was still eligible to take part, and they were happy my test results were good enough. Next was the post-transplant coordinator who delivered a pack of information about what happens next and gave me a vague indication that Friday 20th could be a possible day to leave. Finally I talked to a researcher who is doing a PhD on mental and physical outcomes of liver transplant surgery and agreed to fill in four questionnaires for her over the next year.
Then my friend Robin came to visit, and we chatted for a while and I had some dinner, then he and I went for another walk. This time I got much further - all the way out of the ward to the main staircases/lifts, then back again.
Later in the evening I had my I-V drip removed and told I would probably not need it any more as I'm now drinking and peeing pretty much fine. There is still a little swelling in my thighs and hips but I think it's going down.
So another good day - lots of people telling me I was doing very well for what they confusingly call Day 6 (surgery day + 6 days). I celebrated by staying up a bit late watching the last film and a half of the lord of rings. I also chatted quite a long time to my night nurse who turned out to be a huge fan of strictly come dancing and loved my insider gossip :)
In the morning I went for another ultrasound, which was very successful and everyone was pleased with the results. Didn't manage much breakfast, but did better with lunch having a vaguely normal small-ish portion. A doctor came to see me and said he was happy with my progress and that I would probably have my drain tube out very soon to be replaced by a bag instead so that it could start healing up naturally.
The physio came to see me after lunch and we went for a relatively long walk - all the way out of the ward and part of the way along the corridor, then back again. I then had a visit from my aunt, cousin, and second-cousin which was great, then had a meeting with a few people to talk about my progress. Firstly there was the clinical trial team who came to assess whether I was still eligible to take part, and they were happy my test results were good enough. Next was the post-transplant coordinator who delivered a pack of information about what happens next and gave me a vague indication that Friday 20th could be a possible day to leave. Finally I talked to a researcher who is doing a PhD on mental and physical outcomes of liver transplant surgery and agreed to fill in four questionnaires for her over the next year.
Then my friend Robin came to visit, and we chatted for a while and I had some dinner, then he and I went for another walk. This time I got much further - all the way out of the ward to the main staircases/lifts, then back again.
Later in the evening I had my I-V drip removed and told I would probably not need it any more as I'm now drinking and peeing pretty much fine. There is still a little swelling in my thighs and hips but I think it's going down.
So another good day - lots of people telling me I was doing very well for what they confusingly call Day 6 (surgery day + 6 days). I celebrated by staying up a bit late watching the last film and a half of the lord of rings. I also chatted quite a long time to my night nurse who turned out to be a huge fan of strictly come dancing and loved my insider gossip :)
Thursday, February 12, 2009
Rest of day 6 and night time.
I was definitely in a little more pain than during day 5, all though part of that is due to a downgrade of my baseline painkillers. Some of the fluid retention seemed to go down during the day, and my temperature normalised quite quickly. They changed my dressing and the wound looked pretty clean and in good condition.
I started on some solid food. I did ok at lunch with a few pieces of ravioli, but didn't manage much food at all at dinner. Generally the food here is not very good and tends towards overcooked/over-thickened.
My Dad and Carole spent much of the afternoon with me, and I also saw a couple of friends too. Had to cancel on my friend Alex in the evening sadly as I just felt a bit too knackered.
I slept reasonably well, though did experience an odd pain in my left-abdomen both front and back. My nurse has scheduled a doctor to come and talk to me about it, but reckons it's probably nothing more than a muscular thing. We overcame it with a top up oxy-codine injection.
Today I hope to get some feedback from yesterday's chest x-ray, and the blood and urine cultures to hopefully confirm I have no infection. Also hopefully the puffiness of my legs will continue to go down as my kidneys ramp up better. Otherwise it's about pain-management and when that's ok making sure I get myself up and walking again.
I started on some solid food. I did ok at lunch with a few pieces of ravioli, but didn't manage much food at all at dinner. Generally the food here is not very good and tends towards overcooked/over-thickened.
My Dad and Carole spent much of the afternoon with me, and I also saw a couple of friends too. Had to cancel on my friend Alex in the evening sadly as I just felt a bit too knackered.
I slept reasonably well, though did experience an odd pain in my left-abdomen both front and back. My nurse has scheduled a doctor to come and talk to me about it, but reckons it's probably nothing more than a muscular thing. We overcame it with a top up oxy-codine injection.
Today I hope to get some feedback from yesterday's chest x-ray, and the blood and urine cultures to hopefully confirm I have no infection. Also hopefully the puffiness of my legs will continue to go down as my kidneys ramp up better. Otherwise it's about pain-management and when that's ok making sure I get myself up and walking again.
Wednesday, February 11, 2009
Dodgy morning - day 6
I slept pretty well last night, only when I woke up at around 6am I felt a bit droopy and they told me I have a temperature of 38. They've taken some blood cultures this morning which will tell us useful things in about 48 hours.
In the meantime I feel a bit hot and bothered, a little bit in pain, and a bit dozy. Some of the doziness may be because I'm now taking Tramadol for pain instead of the painkiller I was on yesterday - Tramadol does have this effect on me.
I might call the nurse and ask for a top-up injection of oxy-codeine. The physio decided to not try and do anything particular with me today while I'm feeling slightly rough.
I'm yet to see any doctors on round, hopefully they'll give me the nod for soft solid food today - although actually i'm not looking forward to it as much now as I was yesterday as I suspect I'll feel a little nautious.
In the meantime I feel a bit hot and bothered, a little bit in pain, and a bit dozy. Some of the doziness may be because I'm now taking Tramadol for pain instead of the painkiller I was on yesterday - Tramadol does have this effect on me.
I might call the nurse and ask for a top-up injection of oxy-codeine. The physio decided to not try and do anything particular with me today while I'm feeling slightly rough.
I'm yet to see any doctors on round, hopefully they'll give me the nod for soft solid food today - although actually i'm not looking forward to it as much now as I was yesterday as I suspect I'll feel a little nautious.
Tuesday, February 10, 2009
Day 5 - end of a great day
Today has has a huge number of milestones in it.
This morning I was a bloated bag of tubes in fairly constant pain, and coughing a lot.
By tonight I have:
- had my nasal feeding tube removed
- cleared up the cough thereby removing the pain of coughing
- had my catheter removed
- had several drugs changed to oral varieties
- managed to shuffle-walk 30m unaided, then back again.
- had my nasal oxygen tubes removed
- had a UV scan of my new liver which was very successful.
- got up and had a wash and shave.
This has been an amazing day! Each step in itslf was fairly important, but together they really make for stunningly happy day.
Tomorrow is soft-food-starting day, which is very exciting. Also I'll have my last main drain removed, I hope.
Thanks very everyone's kind words of support that I've read so far, and continue to read!
Dave
This morning I was a bloated bag of tubes in fairly constant pain, and coughing a lot.
By tonight I have:
- had my nasal feeding tube removed
- cleared up the cough thereby removing the pain of coughing
- had my catheter removed
- had several drugs changed to oral varieties
- managed to shuffle-walk 30m unaided, then back again.
- had my nasal oxygen tubes removed
- had a UV scan of my new liver which was very successful.
- got up and had a wash and shave.
This has been an amazing day! Each step in itslf was fairly important, but together they really make for stunningly happy day.
Tomorrow is soft-food-starting day, which is very exciting. Also I'll have my last main drain removed, I hope.
Thanks very everyone's kind words of support that I've read so far, and continue to read!
Dave
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