I've been wanting to write an 'I'm home' blog for a week now (for it is a week and one day since I was discharged) but I have found it hard to believe that I won't just be on my way back the moment I utter the words. And for good reason...
Last week my temperature refused to behave, swinging up to 37.9, then down again, 38.1 then down again. Never quite meeting the criteria to be admitted but coming stressfully close. I admit I shed a few tears one night when my temperature hit 38 and the prospect of going back in a mere three days after discharge became a potential reality. But it just went down again one hour later. We believe that I caught a mild cold and may have actually overcome it, I did feel a bit rubbish for a few days, just like when you have a cold. Now I feel ok, touch wood everyone.
So I currently still feel like tomorrow I could be back in hospital and haven't quite relaxed into home life yet. The improvement over the last week in my energy levels and eating have been enormous and I have put on 2 pounds in weight. I now weigh 11st 7lb, I should be about 12st 10lb so I have a little way to go yet.
I still have the rash which is all over my body now, but it is mixed up with 'blood spots' caused by burst capillaries as I have low platelets. This could be caused by the drugs I'm on, the virus' I have or GvHD. This is also the explanation for all my other gripes, such as the headaches. This is the point at which no-one really knows what is going to happen. It is simply a case of wait and see...and suck up the symptoms cause it will be worth it.
Saturday 20 October 2012
Tuesday 9 October 2012
To start, some good news
I had a visit from my consultant yesterday, it was brief as I had been asleep, but essentially he said that he is absolutely sure that Toxoplamosis has been the problem and that I am now on the right treatment (I must admit it's been since they changed all my treatment in response to finding the Toxo that I have felt progressively better). I have issues with fatigue, but that is to be expected I think, it was only last weekend that I was having 39+ temperatures and couldn't breath! But the consultant believes that by the end of the week I should be ready to go home, so Friday! This is obviously brilliant news but I feel like I should stay another couple of weeks - I am so scared of what will happen if I go back to our house this week.
Just to make sure no good bit of news ever reaches you without some thing bad happening too, I have developed oral thrush. Very common in my situation (I thought I was supposed to be on prophelactic anti-fungal drugs to stop this but there we go), very easy to treat and it does explain why my mouth has felt so weird the last few days.
Treating toxoplasmosis does take 3-6 weeks of anti-biotics but these can be taken orally and taken home which is good. The CMV still needs to be treated with IV anti-biotics, so my going home is reliant on what the CMV is doing, the doctor on today would not be drawn on the last result as we will get a new result tomorrow. Blood counts are really good which means that GCS-F injections have ceased, my neutrophils were 6.29 or something, really high. Low platelets though which has led me to bruise quite badly in a few places (elbow and hands mostly, the things that get bashed) and I am having a platelet transfusion right now.
I was weighed this morning too, 73kg with my dressing gown on. I was 80.5kg with my dressing gown off when I came in. That is almost a stone, there is a stone less of me now then there was 5 weeks ago. And even I have to admit it shows, I've got skinny legs and arms. My skinny jeans no longer seductively cling to my frame but hang loose like the sails of a disused trawler left to rot in the harbour. And I've still got massive feet and ankles from all the fluid they pumped into me a couple of weeks back, I can barely get my trainers on, I kid you not.
My musical recommendations for this week are album Barton Fink 'Gear', song Cage The Elephant 'Ain't No Rest For The Wicked'.
Just to make sure no good bit of news ever reaches you without some thing bad happening too, I have developed oral thrush. Very common in my situation (I thought I was supposed to be on prophelactic anti-fungal drugs to stop this but there we go), very easy to treat and it does explain why my mouth has felt so weird the last few days.
Treating toxoplasmosis does take 3-6 weeks of anti-biotics but these can be taken orally and taken home which is good. The CMV still needs to be treated with IV anti-biotics, so my going home is reliant on what the CMV is doing, the doctor on today would not be drawn on the last result as we will get a new result tomorrow. Blood counts are really good which means that GCS-F injections have ceased, my neutrophils were 6.29 or something, really high. Low platelets though which has led me to bruise quite badly in a few places (elbow and hands mostly, the things that get bashed) and I am having a platelet transfusion right now.
I was weighed this morning too, 73kg with my dressing gown on. I was 80.5kg with my dressing gown off when I came in. That is almost a stone, there is a stone less of me now then there was 5 weeks ago. And even I have to admit it shows, I've got skinny legs and arms. My skinny jeans no longer seductively cling to my frame but hang loose like the sails of a disused trawler left to rot in the harbour. And I've still got massive feet and ankles from all the fluid they pumped into me a couple of weeks back, I can barely get my trainers on, I kid you not.
My musical recommendations for this week are album Barton Fink 'Gear', song Cage The Elephant 'Ain't No Rest For The Wicked'.
Saturday 6 October 2012
Written on behalf of
This blog has been requested by my wonderful wife who is somehow holding a home together as well working. And still she talks about what big batch of great, healthy food she's going to do the kids so they're having something proper even though she's not there. Amazing. I honestly do not know how she does it, I would have crashed and burned weeks ago.
Anyhow apparently the length of time I have not blogged has led everyone to think I am back at home. This has obviously led to the inevitable repeated questions and identical conversations with the people who care about how I'm doing, etc. The kind of thing that was one of the driving forces behind starting this blog was making sure all you lovely people are informed all the time so Jo was not the single conduit of information, so I have failed you and her on that, for which I'm sorry, I'm sorry I'm so so sorry, there's no easy way to say that I'm sorry, I'm sorry.
Having said that I have not been sat here slacking. My last blog was done last Saturday night when I'd really pulled through feeling shitty and felt I had the energy to do a quick one. The next morning I wake up, feel ok, bit of tightness on my chest but nothing much. I take a walk down to the tea machine at the end of the corridor and by the time I get there (it isn't far) I feel really dizzy, out of breath and I am asked if I'm ok as I'm clinging onto the table the tea machine sits on. I say I feel dizzy and I'm popped in a wheelchair and told to get back into bed. So on the Sunday morning when Jo turns up, having left me the night before fine, I'm hooked up to an oxygen line and really struggling to breath. I feel like I've got about 50% lung capacity and I have to pant to just to get air. A physio pops in at some point and gives me some relaxing exercises which turn out to be most useful bit of advice I get all day. Then it all got very medicalised, I got oxygen all day, then transferred to an oxygen machine with a nebuliser attached which essentially passed some steam in with the sir supply so it didn't dry out the air passages. I then got moved to the Intermediate Dependency Unit, one below High Dependency Unit.
I'm not sure in hindsight if I needed to go there, they wanted me on this special oxygen machine which 'may feel like you've stuck your head out of a fast moving car'. I managed 20 minutes of what was supposed to be a 2 hour session and had to admit defeat, I've never felt anything like it. The power of the air meant if you relaxed your face you resembled Scooby doo on a windy day, or someone falling from an aeroplane. To take a breath felt like someone ramming air down your throat. But the main issue was breathing out, with my reduced lung function I just couldn't do it and I felt like I was being suffocated. They said 'don't worry quite a few people can't do it', I'd like to meet one that could.
Now there is a happy end. Obviously I am well enough to write a blog right now, that's good. But the up shot of all the recent tests which were spurred into action by quite an unhealthy spell has found that it is VERY likely all of these symptoms, from the grumbling temperatures to the high temperature more recently even including the chest infection, are due to Toxoplasmosis. Another one of these CMV type things that just sits there and you don't know you've got it until you have no defenses. Then, oh boy, you know you've got it. Can lead to lesions on the brain but it is, as with CMV, easily treatable and this just means the doctors are no longer guessing at what the problem is, they know, so they know precisely what antibiotic to give. This is a massive result. I still need to be in, and it could still need to be a few more weeks but I now know I am on the right stuff for what has caused all these issues. You can all have a drink on that tonight, I'm having hot lemon squash.
Anyhow apparently the length of time I have not blogged has led everyone to think I am back at home. This has obviously led to the inevitable repeated questions and identical conversations with the people who care about how I'm doing, etc. The kind of thing that was one of the driving forces behind starting this blog was making sure all you lovely people are informed all the time so Jo was not the single conduit of information, so I have failed you and her on that, for which I'm sorry, I'm sorry I'm so so sorry, there's no easy way to say that I'm sorry, I'm sorry.
Having said that I have not been sat here slacking. My last blog was done last Saturday night when I'd really pulled through feeling shitty and felt I had the energy to do a quick one. The next morning I wake up, feel ok, bit of tightness on my chest but nothing much. I take a walk down to the tea machine at the end of the corridor and by the time I get there (it isn't far) I feel really dizzy, out of breath and I am asked if I'm ok as I'm clinging onto the table the tea machine sits on. I say I feel dizzy and I'm popped in a wheelchair and told to get back into bed. So on the Sunday morning when Jo turns up, having left me the night before fine, I'm hooked up to an oxygen line and really struggling to breath. I feel like I've got about 50% lung capacity and I have to pant to just to get air. A physio pops in at some point and gives me some relaxing exercises which turn out to be most useful bit of advice I get all day. Then it all got very medicalised, I got oxygen all day, then transferred to an oxygen machine with a nebuliser attached which essentially passed some steam in with the sir supply so it didn't dry out the air passages. I then got moved to the Intermediate Dependency Unit, one below High Dependency Unit.
I'm not sure in hindsight if I needed to go there, they wanted me on this special oxygen machine which 'may feel like you've stuck your head out of a fast moving car'. I managed 20 minutes of what was supposed to be a 2 hour session and had to admit defeat, I've never felt anything like it. The power of the air meant if you relaxed your face you resembled Scooby doo on a windy day, or someone falling from an aeroplane. To take a breath felt like someone ramming air down your throat. But the main issue was breathing out, with my reduced lung function I just couldn't do it and I felt like I was being suffocated. They said 'don't worry quite a few people can't do it', I'd like to meet one that could.
Now there is a happy end. Obviously I am well enough to write a blog right now, that's good. But the up shot of all the recent tests which were spurred into action by quite an unhealthy spell has found that it is VERY likely all of these symptoms, from the grumbling temperatures to the high temperature more recently even including the chest infection, are due to Toxoplasmosis. Another one of these CMV type things that just sits there and you don't know you've got it until you have no defenses. Then, oh boy, you know you've got it. Can lead to lesions on the brain but it is, as with CMV, easily treatable and this just means the doctors are no longer guessing at what the problem is, they know, so they know precisely what antibiotic to give. This is a massive result. I still need to be in, and it could still need to be a few more weeks but I now know I am on the right stuff for what has caused all these issues. You can all have a drink on that tonight, I'm having hot lemon squash.
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