Well thanks to it being a Bank Holiday, school holidays and between Olympic/Paralympics London was empty. There were no roadworks holding everything up and we sailed in arriving at the Brompton a record forty minutes early.
There has been a down turn in my condition but not too much, the biggest concern being the two kilos I've lost since my last visit. I am now officially under seven stones and that is not good. So I'm back on the Complan, whoop de doop de doo! The trouble is that I'm filling myself up on fruit, because that is all I can face, which is very healthy but not very calorific. I have been advised to 'get a bacon butty' down me with a side order of cheesy chips and do it at least once a day, I want to puke just thinking about it. I've been referred back to palliative care team to see if they can stop me feeling sick without destroying my appetite. I'm actually in a catch 22 situation. The drug I take is based on bodyweight so you get a dose specific to how much you weigh. If you put weight on the drug becomes less effective and will need increasing if the weight gain looks long term. If you lose weight then the drug become too strong causing nausea which means you lose more weight and this in turn makes the drug even stronger. I can't win. They cannot take me off the drug because it is the only thing left and so in effect I'm slowly starving.
I am also showing signs of extreme stress with my blood pressure and pulse up on my normal sedate readings. They already know the cause and are both appalled and upset on my behalf. My consultant gave me a letter and offered to ring up and give the person concerned a telling off but I said the letter would be fine for now. The sad thing is PH is so misunderstood that this sort of event is not a rare occurrence so they are more used to putting idiots in their place than they ought to be.
We discussed the transplant situation and the good news is Papworth are willing to assess me and will be sending me out an appointment in the next week or so, where have I heard that one before? The delay has been caused by Harefield, who have yet to pass on to the Brompton the exact reasons for rejecting me. The Brompton maintain that my heart is in very good condition and after looking over my test results Papworth seem to agree so no one can understand why I was rejected, unless it was a mistake. I don't even want to go down that path.
I am assured that Papworth reject far less patients than Harefield so I should be positive because there is still a very good chance Papworth will take me on. My consultant says they tend to take on even the most hopeless of cases, not sure that is actually making me feel any better right now though.
To cheer me up we stopped on the way home for a mug of tea and a sandwich at my favourite biker cafe, the Ace Cafe in north London. As we sat and chatted I admired the rows of shining machinery parked outside. Unlike car owners who think if you show any interest you are planning to nick the thing, bikers are all to happy to show off their polished chrome and custom painted fuel tanks.
As we approached the M1 several police vehicle went whizzing past, we knew all to well what that meant. We caught up with them an hour later as we crawled past the scene of the accident. They were attending a small disagreement between a lorry and a mini bus. No seemed injured though.
So it is back to work tomorrow, another four rest days that weren't. I've booked three weeks off in September and I can't wait, I really need to get away from everything and try and enjoy myself for once.
Next blog Wednesday.
There has been a down turn in my condition but not too much, the biggest concern being the two kilos I've lost since my last visit. I am now officially under seven stones and that is not good. So I'm back on the Complan, whoop de doop de doo! The trouble is that I'm filling myself up on fruit, because that is all I can face, which is very healthy but not very calorific. I have been advised to 'get a bacon butty' down me with a side order of cheesy chips and do it at least once a day, I want to puke just thinking about it. I've been referred back to palliative care team to see if they can stop me feeling sick without destroying my appetite. I'm actually in a catch 22 situation. The drug I take is based on bodyweight so you get a dose specific to how much you weigh. If you put weight on the drug becomes less effective and will need increasing if the weight gain looks long term. If you lose weight then the drug become too strong causing nausea which means you lose more weight and this in turn makes the drug even stronger. I can't win. They cannot take me off the drug because it is the only thing left and so in effect I'm slowly starving.
I am also showing signs of extreme stress with my blood pressure and pulse up on my normal sedate readings. They already know the cause and are both appalled and upset on my behalf. My consultant gave me a letter and offered to ring up and give the person concerned a telling off but I said the letter would be fine for now. The sad thing is PH is so misunderstood that this sort of event is not a rare occurrence so they are more used to putting idiots in their place than they ought to be.
We discussed the transplant situation and the good news is Papworth are willing to assess me and will be sending me out an appointment in the next week or so, where have I heard that one before? The delay has been caused by Harefield, who have yet to pass on to the Brompton the exact reasons for rejecting me. The Brompton maintain that my heart is in very good condition and after looking over my test results Papworth seem to agree so no one can understand why I was rejected, unless it was a mistake. I don't even want to go down that path.
I am assured that Papworth reject far less patients than Harefield so I should be positive because there is still a very good chance Papworth will take me on. My consultant says they tend to take on even the most hopeless of cases, not sure that is actually making me feel any better right now though.
To cheer me up we stopped on the way home for a mug of tea and a sandwich at my favourite biker cafe, the Ace Cafe in north London. As we sat and chatted I admired the rows of shining machinery parked outside. Unlike car owners who think if you show any interest you are planning to nick the thing, bikers are all to happy to show off their polished chrome and custom painted fuel tanks.
As we approached the M1 several police vehicle went whizzing past, we knew all to well what that meant. We caught up with them an hour later as we crawled past the scene of the accident. They were attending a small disagreement between a lorry and a mini bus. No seemed injured though.
So it is back to work tomorrow, another four rest days that weren't. I've booked three weeks off in September and I can't wait, I really need to get away from everything and try and enjoy myself for once.
Next blog Wednesday.
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