Well the three days of enforced rest are over and it's an early start to get to the hospital by 09.15. Today is test day, first the CT, then the echo and of course the obligatory blood tests.
Yesterday I bit the bullet and went to see my GP to get signed off sick. He took one look at me and promptly wrote out a note for two weeks 'as a start'. Whatever happens I'm now off until 23rd May. I hadn't unpacked my bag from Friday as I was sure they were going to keep me in so it didn't take long to get everything ready and by early evening I was ready to go.
Traffic was not so good today and I made my appointment time for my CT scan by a whisker only to find it had been cancelled and moved to this afternoon. On the ward I had my first run in of the day when they tried to take all my medication off me. No way was that going to happen. I am not a moron or a child, if I can be trusted to take it out of hospital then I can be trusted to take it in hospital. They say it is their policy, well two fingers to their stupid policy. It was not their policy when I was last in. Saw the doctor who ran me through what they are considering for me. The Hickman line is still the fore runner.
Went down to have my echo first which went like clockwork though took rather longer than usual. Back on the ward I had barely time to get back on the bed before another porter arrived to wheel me down to have my CT. Everything was going well until I noticed that he'd sailed past the CT lab and was heading to an area I was unfamiliar with. I challenged this, reminding him that I was going to CT. He thrust a piece of paper in my face and said 'pacing'.
'Pacing? I've got no reason to go to pacing, I haven't got a pacemaker.'
'Pacing', the piece of paper was waved in my face once more.
'No CT'.
'Pacing'
'Oh for God's sake! I haven't GOT a pacemaker.'
I even pulled down my top to show him but he was adamant. Fortunately my consultant happened to round the corner just at that moment and ordered the porter to get me to CT without any further delay.
Back on the ward the long wait for results began. I knew it was bad when not one but 2 consultants, 2 registrars, and the ward sister turned up. I was even more convinced it was bad news when my consultant squatted down beside the bed. I won't bore you with the details of the conversation, mostly because I was so shocked I only heard half of it. The echo showed a big difference from the one I had in April. My pressures are up, up,up and the right side of my heart is not coping with the rise. The only thing they can do is get a Hickman line inserted and start me on Flolan. Because I am so ill they are writing to my PCT as an urgent case and with luck I'll be back in 2 -3 weeks to have the line put in. In the meantime I'm grounded. I must not walk, climb stairs, lift carry etc, etc. On the plus side no signs of any clots and both my lungs and my arteries are coping well, for the moment. With every cloud etc. Oh and the transplant team are being given another kick up the backside and told to get a wriggle on.
Yesterday I bit the bullet and went to see my GP to get signed off sick. He took one look at me and promptly wrote out a note for two weeks 'as a start'. Whatever happens I'm now off until 23rd May. I hadn't unpacked my bag from Friday as I was sure they were going to keep me in so it didn't take long to get everything ready and by early evening I was ready to go.
Traffic was not so good today and I made my appointment time for my CT scan by a whisker only to find it had been cancelled and moved to this afternoon. On the ward I had my first run in of the day when they tried to take all my medication off me. No way was that going to happen. I am not a moron or a child, if I can be trusted to take it out of hospital then I can be trusted to take it in hospital. They say it is their policy, well two fingers to their stupid policy. It was not their policy when I was last in. Saw the doctor who ran me through what they are considering for me. The Hickman line is still the fore runner.
Went down to have my echo first which went like clockwork though took rather longer than usual. Back on the ward I had barely time to get back on the bed before another porter arrived to wheel me down to have my CT. Everything was going well until I noticed that he'd sailed past the CT lab and was heading to an area I was unfamiliar with. I challenged this, reminding him that I was going to CT. He thrust a piece of paper in my face and said 'pacing'.
'Pacing? I've got no reason to go to pacing, I haven't got a pacemaker.'
'Pacing', the piece of paper was waved in my face once more.
'No CT'.
'Pacing'
'Oh for God's sake! I haven't GOT a pacemaker.'
I even pulled down my top to show him but he was adamant. Fortunately my consultant happened to round the corner just at that moment and ordered the porter to get me to CT without any further delay.
Back on the ward the long wait for results began. I knew it was bad when not one but 2 consultants, 2 registrars, and the ward sister turned up. I was even more convinced it was bad news when my consultant squatted down beside the bed. I won't bore you with the details of the conversation, mostly because I was so shocked I only heard half of it. The echo showed a big difference from the one I had in April. My pressures are up, up,up and the right side of my heart is not coping with the rise. The only thing they can do is get a Hickman line inserted and start me on Flolan. Because I am so ill they are writing to my PCT as an urgent case and with luck I'll be back in 2 -3 weeks to have the line put in. In the meantime I'm grounded. I must not walk, climb stairs, lift carry etc, etc. On the plus side no signs of any clots and both my lungs and my arteries are coping well, for the moment. With every cloud etc. Oh and the transplant team are being given another kick up the backside and told to get a wriggle on.
With regard to the patient's medications, different wards in the same hospital seem to have different policies. On one occasion all my medications were confiscated and destroyed. On discharge, a week later, I had to go to the hospital dispensary with a prescription for a fresh supply. Now I just take a one day supply (onto the ward) and type written list of all medications.
ReplyDeleteSorry to hear that your condition has become worse. Did they say what the pressures were? Hope your PCT makes a quick and positive response.
That is a really good idea regarding the meds. Thanks for that. My pressures have gone up 10 points to 80, which isn't much but obviously enough to tip me over the edge.
ReplyDelete