It's been a few days since I last wrote but three days ago my condition went from grumbling high-ish temperatures of 38.1s and 38.2s to 39.9! And this continued for two days, this morning I woke up feeling incredibly bad, but by this afternoon I feel loads better. This I attribute to my wonderful wife who came in at 10am to find me still in bed having ignored my breakfast (I haven't been able to eat during these two days and have been sick for the first time since all this treatment started - and I'm not on any chemo), she got me out of bed, got me sitting in a chair, and chatting and eventually eating. This has made me feel immensely better.
So the upshot is: I'm still in, but I now have my own room. My CMV levels over the last 3 weeks have gone 180,000 - 77,000 - 20,000 so we are hopeful the next one will be negative. My neutrophils are on the rise 0.17 - 0.20 - 0.30 over the last three days, I'm even creating red blood cells. Predictions are that I will be in another week meaning I'll have been here this time for as long as I was to have my transplant! and I'll have been on the ward for 10 weeks out of the last 13. Scary stuff.
Saturday 29 September 2012
Friday 21 September 2012
One thing leads to another...
I remain in hospital and probably will be here over the weekend, but amazingly what I came in for is not what I am now staying in for. Let me explain.
Having come in and been diagnosed with CMV I was put onto an antibiotic called ganciclovir (gan-SIGH-clo-veer). This is doing the job and has brought the number of CMV cells in my blood down from 200,000 to 180,000, which is apparently good and would be enough to send me home with oral antibiotics. But while in I have been found to have low sodium levels in my blood. Following saline drips and a cap on my water intake of 2.5 litres a day, this didn't change so levels of hormones in my blood were investigated by the endocrine department and low and behold I was found to have low cortisol levels, which can result in low sodium levels. And this is also part of the reason I have been so tired: cortisol is released by the adrenaline glands, situated on top of the kidneys, mostly in the morning to get you up then the levels slowly decrease through the day and are lowest at night.
The theory is that I have had quite a lot of steroids over the last 18 months and therefore my body has almost lost the ability to know when to release it's own. So I am now on hydrocortisone tablets (a low dose) to compensate. But they want to see if my sodium levels come back up to normal.
Also the ganciclovir has caused all of my blood counts to plummet, which is quite common, but it has made me neutropenic! So I have had to have injections to try and boost my white blood count, and obviously I won't be allowed home until I am no longer neutropenic, so we are waiting for those to recover. If they don't then I will have to go onto a different antibiotic, including one that has to be breathed in as a vapour on a special machine.
AND, because I have continued to get headaches they want to do an MRI scan of my head, but they seem a little concerned about the metal work in my neck. It does make you think what might happen if I was put into a really strong magnetic field with two massive titanium rods in my neck! Could be a little uncomfortable.
So it's all waiting at the moment.
I am happy that my rash has now gone, the skin is quite dry and itchy in it's place so I am back on the paraffin lotion which has helped no end but means I spend most of the morning and post shower in the evening looking like a greased up nutter waiting for a bare fist fight. Although this is getting better as my hair is coming back! A small smattering on my head and the magicians moustache and triangular beard. I feel like it has taken longer to start to recover this time, but I hope it is as quick as it was last time now it's started where it seemed to go from nothing to everything in a very short amount of time. It's so good to see it though, like an old friend.
Having come in and been diagnosed with CMV I was put onto an antibiotic called ganciclovir (gan-SIGH-clo-veer). This is doing the job and has brought the number of CMV cells in my blood down from 200,000 to 180,000, which is apparently good and would be enough to send me home with oral antibiotics. But while in I have been found to have low sodium levels in my blood. Following saline drips and a cap on my water intake of 2.5 litres a day, this didn't change so levels of hormones in my blood were investigated by the endocrine department and low and behold I was found to have low cortisol levels, which can result in low sodium levels. And this is also part of the reason I have been so tired: cortisol is released by the adrenaline glands, situated on top of the kidneys, mostly in the morning to get you up then the levels slowly decrease through the day and are lowest at night.
The theory is that I have had quite a lot of steroids over the last 18 months and therefore my body has almost lost the ability to know when to release it's own. So I am now on hydrocortisone tablets (a low dose) to compensate. But they want to see if my sodium levels come back up to normal.
Also the ganciclovir has caused all of my blood counts to plummet, which is quite common, but it has made me neutropenic! So I have had to have injections to try and boost my white blood count, and obviously I won't be allowed home until I am no longer neutropenic, so we are waiting for those to recover. If they don't then I will have to go onto a different antibiotic, including one that has to be breathed in as a vapour on a special machine.
AND, because I have continued to get headaches they want to do an MRI scan of my head, but they seem a little concerned about the metal work in my neck. It does make you think what might happen if I was put into a really strong magnetic field with two massive titanium rods in my neck! Could be a little uncomfortable.
So it's all waiting at the moment.
I am happy that my rash has now gone, the skin is quite dry and itchy in it's place so I am back on the paraffin lotion which has helped no end but means I spend most of the morning and post shower in the evening looking like a greased up nutter waiting for a bare fist fight. Although this is getting better as my hair is coming back! A small smattering on my head and the magicians moustache and triangular beard. I feel like it has taken longer to start to recover this time, but I hope it is as quick as it was last time now it's started where it seemed to go from nothing to everything in a very short amount of time. It's so good to see it though, like an old friend.
Sunday 16 September 2012
The Answer
Well thank you to all the people who suggested ways around my conundrum. Answers varied from alternating mouthfuls, tad disgusting, to just eating the cereal and binning the toast, which I'm sorry but that just isn't an option: I have to eat everything. Congratulations go to Jack who got it on his second attempt: get the milk brought separately then you are free to eat your toast without disastrous cereal sogging in the meantime. You got to step outside the box people, that's why he is a doctor.
I've been put on a water limit as I was once again drinking too much, causing me to have consistently low sodium levels in my blood, so I am not allowed to drink more than 2.5 litres in a day. It is so hard, I have them telling me to keep drinking to keep my kidneys flushed as the drugs I'm on are quite harsh on that particular organ, but then I can't drink as much as they say as it lowers sodium levels. I'm not sure what they'll do when I get to 2.5 litres, refuse to give me any more water?
My temperature has stayed below 38 since Thursday night, but the antibiotic I was put on when my temperature went up before (a general antibiotic that you get automatically after a spike called Meropenum) stopped this morning and they stopped this before on Thursday morning after my initial spike...and Thursday night, well, I refer to the beginning of this paragraph. So I am a little nervous right now.
Felt really tired this morning and really struggled to get going, partly to do with a bad night's sleep and partly because I was found to need a blood transfusion. I had this early this morning and I felt loads better pretty soon after. I was able to really enjoy my visits from Jo this morning and Neil this afternoon. Thanks go out to Buff for once again doing my washing. Plus thanks to Neil for burning me the alt-J album 'An Awesome Wave' which I have to say wouldn't normally be my thing but it is brilliant, very different. Along with The Heavy's album 'The Glorious Dead' which I invested in the other day my need for new music this month has been suitably satisfied.
I've been put on a water limit as I was once again drinking too much, causing me to have consistently low sodium levels in my blood, so I am not allowed to drink more than 2.5 litres in a day. It is so hard, I have them telling me to keep drinking to keep my kidneys flushed as the drugs I'm on are quite harsh on that particular organ, but then I can't drink as much as they say as it lowers sodium levels. I'm not sure what they'll do when I get to 2.5 litres, refuse to give me any more water?
My temperature has stayed below 38 since Thursday night, but the antibiotic I was put on when my temperature went up before (a general antibiotic that you get automatically after a spike called Meropenum) stopped this morning and they stopped this before on Thursday morning after my initial spike...and Thursday night, well, I refer to the beginning of this paragraph. So I am a little nervous right now.
Felt really tired this morning and really struggled to get going, partly to do with a bad night's sleep and partly because I was found to need a blood transfusion. I had this early this morning and I felt loads better pretty soon after. I was able to really enjoy my visits from Jo this morning and Neil this afternoon. Thanks go out to Buff for once again doing my washing. Plus thanks to Neil for burning me the alt-J album 'An Awesome Wave' which I have to say wouldn't normally be my thing but it is brilliant, very different. Along with The Heavy's album 'The Glorious Dead' which I invested in the other day my need for new music this month has been suitably satisfied.
Thursday 13 September 2012
Conundrum
Here's a little conundrum that I have to deal with every morning. I wondered what other people would do.
You are brought your breakfast and it is a bowl of Bran Flakes with the milk already poured on and two slices of toast which, by the time they reach you, are warm but not hot. Thus, the cereals are going soggy by the second and the more the toast cools the more it resembles cardboard and, obviously, the less butter meltage you'll get when it is applied. Which do you eat first? If you eat the cereals at their best you will end up eating cold, hard toast and if you eat the toast first your cereals will be mush. Help me out.
My temperature has now remained below 38 for more than 24 hours which is good, I do not feel anywhere near as tired as I did a few days ago. I had a short lie down earlier but didn't fall asleep and I've read quite a bit of my book which I haven't physically been able to do for a few days as I couldn't keep my eyes open.
My rash is under control where I have applied the ointment but it is spreading so fast it is hard to apply the ointment everywhere, it is now on my legs and arms and bum, which is quite uncomfortable as I spend a lot of time on my bottom right now and it is really itchy. It does look a bit nasty in places though.
But wherever I have applied the ointment for a few days it does seem to clear it up, but as it is starting to cover a significant portion of my body it is not appropriate to apply so much ointment and I may be put on oral steroids, which isn't great but they do do the job.
You are brought your breakfast and it is a bowl of Bran Flakes with the milk already poured on and two slices of toast which, by the time they reach you, are warm but not hot. Thus, the cereals are going soggy by the second and the more the toast cools the more it resembles cardboard and, obviously, the less butter meltage you'll get when it is applied. Which do you eat first? If you eat the cereals at their best you will end up eating cold, hard toast and if you eat the toast first your cereals will be mush. Help me out.
My temperature has now remained below 38 for more than 24 hours which is good, I do not feel anywhere near as tired as I did a few days ago. I had a short lie down earlier but didn't fall asleep and I've read quite a bit of my book which I haven't physically been able to do for a few days as I couldn't keep my eyes open.
My rash is under control where I have applied the ointment but it is spreading so fast it is hard to apply the ointment everywhere, it is now on my legs and arms and bum, which is quite uncomfortable as I spend a lot of time on my bottom right now and it is really itchy. It does look a bit nasty in places though.
This is round my waist:
And this is the best picture I could take of my back (I didn't even know I had the rash on my back as I couldn't see it!):
Wednesday 12 September 2012
Still here...
So, good news and bad news.
The bad news is I'm still here, with a fluctuating temperature which goes over 38 every evening. When this happens I am automatically in for at least another 48 hours, and I can't help but feel that they won't be quite as keen to let me go home considering how quickly I ended back in before. So I am very likely to be here for at least a week now, over the weekend I'm sure.
But to be quite honest this is probably the best place for me - I have never slept so much in my life, this is my typical day:
09:00 - get woken up for breakfast
09:15 - eat breakfast, clean teeth, apply various skin creams
10:00 - go back to bed, exhausted
11:45 - get woken up to choose lunch
12:00 - eat lunch
12:30 - clean teeth and go back to bed
15:00 - rouse, try to read, fail, watch DVD or 4onDemand
17:00 - eat tea, clean teeth
18:00-21:00 - try to stay awake in any way I can as I want to sleep at night
21:30 - go to bed
Exciting stuff.
The good news is that I have a rash! And it is now generally agreed between the consultant and ward doctors that it is GvHD related, not drug related. This, the consultant said, is 'good for you'. This is great news, my donor is in there fighting, which means it is likely she will be fighting the Myeloma which is great. The rash doesn't itch, although it is pretty unsightly, and if I was going to get any GvHD issue it would be skin problems - I am very used to rashes. So right now I have an ointment which appears to be controlling it so I am not worried, I am very happy.
The bad news is I'm still here, with a fluctuating temperature which goes over 38 every evening. When this happens I am automatically in for at least another 48 hours, and I can't help but feel that they won't be quite as keen to let me go home considering how quickly I ended back in before. So I am very likely to be here for at least a week now, over the weekend I'm sure.
But to be quite honest this is probably the best place for me - I have never slept so much in my life, this is my typical day:
09:00 - get woken up for breakfast
09:15 - eat breakfast, clean teeth, apply various skin creams
10:00 - go back to bed, exhausted
11:45 - get woken up to choose lunch
12:00 - eat lunch
12:30 - clean teeth and go back to bed
15:00 - rouse, try to read, fail, watch DVD or 4onDemand
17:00 - eat tea, clean teeth
18:00-21:00 - try to stay awake in any way I can as I want to sleep at night
21:30 - go to bed
Exciting stuff.
The good news is that I have a rash! And it is now generally agreed between the consultant and ward doctors that it is GvHD related, not drug related. This, the consultant said, is 'good for you'. This is great news, my donor is in there fighting, which means it is likely she will be fighting the Myeloma which is great. The rash doesn't itch, although it is pretty unsightly, and if I was going to get any GvHD issue it would be skin problems - I am very used to rashes. So right now I have an ointment which appears to be controlling it so I am not worried, I am very happy.
Monday 10 September 2012
Out...and in again
Oh dear. Released from hospital at 17:30 Friday, readmitted at 19:00 on Sunday. So I managed two days out, in which time at least I was home for the Butterfly Party, and did actually help out a bit - obviously without going near any of the kids just in case. I operated the music for pass the parcel, things like that, Jo orchestrated it. I have to say it was only 9 kids for two and a half hours but it was absolute chaos and incredibly tiring. It is one theory that going home to that level of activity is possibly the reason I have ended up back in here!
My temperature shot up to 38.8 last night out of nowhere so that is instant admission even though I'm not exhibiting any other symptoms and it seems very likely to me to be CMV related. But they have to be so careful I am back in, back on more antibiotics as it is a new spike and therefore has to be treated as any spike would. Probably for a few days. Which to be honest I think I need to rest all: I have done today is sleep, I just cannot physically keep my eyes open, I went downstairs earlier on and suddenly felt like I was going to faint, I'm just getting ridiculously tired at the slightest activity.
I'm getting a rash across my shoulders and around my belt line, but the doctors think this is a mild folliculitus and not GvHD related. Shame.
So it's back to watching Green Wing for a few days and finishing Inheritance, which is properly building for some mega dragon battle, can't put it down. Unless I'm falling asleep.
My temperature shot up to 38.8 last night out of nowhere so that is instant admission even though I'm not exhibiting any other symptoms and it seems very likely to me to be CMV related. But they have to be so careful I am back in, back on more antibiotics as it is a new spike and therefore has to be treated as any spike would. Probably for a few days. Which to be honest I think I need to rest all: I have done today is sleep, I just cannot physically keep my eyes open, I went downstairs earlier on and suddenly felt like I was going to faint, I'm just getting ridiculously tired at the slightest activity.
I'm getting a rash across my shoulders and around my belt line, but the doctors think this is a mild folliculitus and not GvHD related. Shame.
So it's back to watching Green Wing for a few days and finishing Inheritance, which is properly building for some mega dragon battle, can't put it down. Unless I'm falling asleep.
Wednesday 5 September 2012
Diagnosis
A result! My raised temperature and under the weather feeling was caused by the on set of Cytomegalovirus (CMV). I can't remember if I've mentioned this before in any of my blogs but this is a virus, related to the herpes virus, which it is estimated half of all adults have. You catch it through close contact with bodily fluids and most healthy people will never know they have it, it just sits dormant.
However, if you don't have an immune system it is very likely to make the most of it. My donor had it, I didn't, but now I do and I was told that it was very likely that it would activate at some point. It is more of an inconvenience than a real problem as the doctors know exactly how to treat it. It means having around 2 weeks of antibiotics, but luckily I am being allowed to administer them to myself at home via a PICC line which I have today had inserted into my arm. It is amazing actually, the line is situated about 3 inches from my armpit. When the fellow was putting it in I could see him doing an action which looked like he was pushing something further and further in to my arm, and at the end I saw on the table a really long feeder wire. Then I went for an x-ray of my chest as they wanted to make sure the line had reached my heart! From my arm! I was stunned if I'm honest and I didn't even feel anything.
My temperature is now in the normal range and if it stays that way and I show the nurse here I'm capable of doing my antibiotics I should be discharged on Friday, so the Butterfly Party is on!
However, if you don't have an immune system it is very likely to make the most of it. My donor had it, I didn't, but now I do and I was told that it was very likely that it would activate at some point. It is more of an inconvenience than a real problem as the doctors know exactly how to treat it. It means having around 2 weeks of antibiotics, but luckily I am being allowed to administer them to myself at home via a PICC line which I have today had inserted into my arm. It is amazing actually, the line is situated about 3 inches from my armpit. When the fellow was putting it in I could see him doing an action which looked like he was pushing something further and further in to my arm, and at the end I saw on the table a really long feeder wire. Then I went for an x-ray of my chest as they wanted to make sure the line had reached my heart! From my arm! I was stunned if I'm honest and I didn't even feel anything.
My temperature is now in the normal range and if it stays that way and I show the nurse here I'm capable of doing my antibiotics I should be discharged on Friday, so the Butterfly Party is on!
Tuesday 4 September 2012
Serves me right
I knew I shouldn't have done it. Yesterday I discussed going back to work with my boss, today I am back in Addenbrookes on anti-biotics for a raised temperature. I'd been feeling under the weather for a few days and my temperature had been teetering just below 38, but yesterday it crept over and that means automatic admission.
Annoyingly my temperature did not go up until 21:00, and we didn't leave the house till gone 22:00, and that meant bundling the kids out of bed into the car (which they didn't mind at all) and getting to Addenbrookes at 23:30. For administration reasons I have to go through A&E, which is ok as haematology ensure I am ushered into a side room, but it does mean being in A&E for 2 hours before being moved to the ward. I got to bed finally at 03:00 and slept very soundly. I got one night in my own room and now I have been booted out into a bay, which is fine - the two people in here are so old I don't think they'll give me any problems.
My temperature today has already gone down to 36.7 and I have been told it is likely that I will be going home in a couple of days providing it stays down, I have no other symptoms to talk of. So I should be home in time for the Butterfly party on Saturday!
Annoyingly my temperature did not go up until 21:00, and we didn't leave the house till gone 22:00, and that meant bundling the kids out of bed into the car (which they didn't mind at all) and getting to Addenbrookes at 23:30. For administration reasons I have to go through A&E, which is ok as haematology ensure I am ushered into a side room, but it does mean being in A&E for 2 hours before being moved to the ward. I got to bed finally at 03:00 and slept very soundly. I got one night in my own room and now I have been booted out into a bay, which is fine - the two people in here are so old I don't think they'll give me any problems.
My temperature today has already gone down to 36.7 and I have been told it is likely that I will be going home in a couple of days providing it stays down, I have no other symptoms to talk of. So I should be home in time for the Butterfly party on Saturday!
Saturday 1 September 2012
Another check in
Had a consultant appointment on Friday, and it is all still looking good. Blood counts are still ok, red blood count had gone up a bit (a tiny bit), but the consultant said it shows I am making blood which is all they want. The most stunning piece of news though is my serum free light chain result, now I think the maximum you want your serum free light chain is around 20. As I'm sure you all know mine started out back in May last year at 3880 (I was described by one haematology nurse as 'on paper you were a wreck'). My levels are, right now, 1.6! And the consultant said, right now, he is not concerned about the Myeloma. Great news.
Also feel a lot better about the current side effects I'm suffering which include high sensitivity to temperature, shakes and cramps in my hands. This is all to do with the immuno-suppressant; I am on a high dose apparently as my consultant is not convinced that I didn't suffer with a bit of GvHD in the hospital. This is also really good news as we were told the rash I had in hospital was probably drug related, so to know I may have had a bit of GvHD is great. I can live with the shakes.
He described the next few months. I am currently on Day 42, 6 weeks post-transplant, and at around day 100 he will start to wean off the immuno-suppressant drugs to see what happens. This is the point at which they are reasonably comfortable you should not suffer with acute GvHD, then a further 3 months will pass before he starts to relax about chronic GvHD. At this point, he said, you can start to think about going back to work...I'm thinking about going back to work next week! I think though when they say these things they assume you have to go into an office, I've been lucky enough to have a workplace who let me work from home, and as I feel ok I can see no reason not to start testing the water and try a day to see how it goes and build it if it goes well. Looking forward to that.
If you like caravans and you fancy a laugh click here.
Also feel a lot better about the current side effects I'm suffering which include high sensitivity to temperature, shakes and cramps in my hands. This is all to do with the immuno-suppressant; I am on a high dose apparently as my consultant is not convinced that I didn't suffer with a bit of GvHD in the hospital. This is also really good news as we were told the rash I had in hospital was probably drug related, so to know I may have had a bit of GvHD is great. I can live with the shakes.
He described the next few months. I am currently on Day 42, 6 weeks post-transplant, and at around day 100 he will start to wean off the immuno-suppressant drugs to see what happens. This is the point at which they are reasonably comfortable you should not suffer with acute GvHD, then a further 3 months will pass before he starts to relax about chronic GvHD. At this point, he said, you can start to think about going back to work...I'm thinking about going back to work next week! I think though when they say these things they assume you have to go into an office, I've been lucky enough to have a workplace who let me work from home, and as I feel ok I can see no reason not to start testing the water and try a day to see how it goes and build it if it goes well. Looking forward to that.
If you like caravans and you fancy a laugh click here.
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