No sooner do I touch base than I'm off again, this time into London for the Brompton. Unusually the roads were really clear today and we sailed in arriving a full forty five minutes early and found two disabled bays empty right in front of the hospital so we decided to relax with a coffee in the hospital cafe before going to my appointment.
I have never been in anywhere as disorganised as the outpatients of this hospital. I'm booked in for an echo first and, following the instructions in the letter they sent, I turn up with ten minutes to spare at the Sydney Street site (the hospital is split in two with half in Sydney Street and half in Fulham Road) only to be told by the snooty receptionist that my appointment has been switched to the Fulham Road site. Well thanks a bunch for informing ME, the patient, of the change. We hot footed it around to the other hospital building and arrived hot, sweaty and breathless with only seconds to spare, so much for arriving calm and relaxed for once. The outpatients clinic confirmed the change of venue and directed me to the x-ray department. Thankfully we only had to wait for fifteen minutes and I was soon back in front of the receptionist at the clinic where she gave me a white slip for an ECG, in exactly the same department as I'd just walked from. It seems no one has told admin that PH patients have difficulty walking distances, especially at speed. Anyway once all the tests were done I was back in front of of my nurse specialist. After a long discussion we decided to give the dose increase another go because my echo showed that my heart is still under strain and although my pressures have dropped a bit they are still not what everyone was hoping for. I am trying to be positive and look on the bright side that there has been SOME improvement but I can't help feeling just a little disappointed. As Carl pointed out though, I have been through a really rough few months and when you've been that ill it is not as easy to bounce right back.
I must admit that I'm a bit nervous of this increase as last time I ended up unable to leave the bathroom for nearly three days so Carl has given me a load of super duper strength anti sickness tablets. He is convinced that because I've been on 1.2 for so long my body will be fully used to the drug by now and increasing to 1.4 shouldn't cause me any problems. I'll wait and see but will not be allowing my sickness tablets more than a foot away from me for the next week or so.
Today we had no trouble parking and I must say despite multiple warnings we didn't have any problems in Aberystwyth either. The warnings were the result of a little traffic warden trouble. Aberystwyth is currently the only town in the country which does not have any traffic wardens. This is because the police, who originally employed the wardens decided they couldn't afford them anymore and terminated their employment from the first of June. The council, as efficient as usual, cannot put measures in place to re-employ the wardens until at least June next year so anarchy reigns, or so I was lead to believe. Certainly from the newspaper clippings I was sent all hell had broken out with numerous disputes and minor accidents but when we got there the parking was better than it had ever been. We had no trouble finding free disabled bays and noticed that car congestion was vastly improved on previous visits. Looks like once everyone is left to their own devices everything runs much more smoothly than when policed.
Back to work tomorrow, this time increasing to six hours a day, not sure if this is wise so close to my drug increase but if I can't do then I can't do and will revert back to four hours for a few weeks more. However once this increase kicks in hopefully I'll manage without any problems, fingers crossed.
The journey back
I have never been in anywhere as disorganised as the outpatients of this hospital. I'm booked in for an echo first and, following the instructions in the letter they sent, I turn up with ten minutes to spare at the Sydney Street site (the hospital is split in two with half in Sydney Street and half in Fulham Road) only to be told by the snooty receptionist that my appointment has been switched to the Fulham Road site. Well thanks a bunch for informing ME, the patient, of the change. We hot footed it around to the other hospital building and arrived hot, sweaty and breathless with only seconds to spare, so much for arriving calm and relaxed for once. The outpatients clinic confirmed the change of venue and directed me to the x-ray department. Thankfully we only had to wait for fifteen minutes and I was soon back in front of the receptionist at the clinic where she gave me a white slip for an ECG, in exactly the same department as I'd just walked from. It seems no one has told admin that PH patients have difficulty walking distances, especially at speed. Anyway once all the tests were done I was back in front of of my nurse specialist. After a long discussion we decided to give the dose increase another go because my echo showed that my heart is still under strain and although my pressures have dropped a bit they are still not what everyone was hoping for. I am trying to be positive and look on the bright side that there has been SOME improvement but I can't help feeling just a little disappointed. As Carl pointed out though, I have been through a really rough few months and when you've been that ill it is not as easy to bounce right back.
I must admit that I'm a bit nervous of this increase as last time I ended up unable to leave the bathroom for nearly three days so Carl has given me a load of super duper strength anti sickness tablets. He is convinced that because I've been on 1.2 for so long my body will be fully used to the drug by now and increasing to 1.4 shouldn't cause me any problems. I'll wait and see but will not be allowing my sickness tablets more than a foot away from me for the next week or so.
Today we had no trouble parking and I must say despite multiple warnings we didn't have any problems in Aberystwyth either. The warnings were the result of a little traffic warden trouble. Aberystwyth is currently the only town in the country which does not have any traffic wardens. This is because the police, who originally employed the wardens decided they couldn't afford them anymore and terminated their employment from the first of June. The council, as efficient as usual, cannot put measures in place to re-employ the wardens until at least June next year so anarchy reigns, or so I was lead to believe. Certainly from the newspaper clippings I was sent all hell had broken out with numerous disputes and minor accidents but when we got there the parking was better than it had ever been. We had no trouble finding free disabled bays and noticed that car congestion was vastly improved on previous visits. Looks like once everyone is left to their own devices everything runs much more smoothly than when policed.
Back to work tomorrow, this time increasing to six hours a day, not sure if this is wise so close to my drug increase but if I can't do then I can't do and will revert back to four hours for a few weeks more. However once this increase kicks in hopefully I'll manage without any problems, fingers crossed.
The journey back
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