Yesterday's trip to the Brompton went better than expected thought the drive in was a nightmare. Everything was flowing well until we hit Oxford Street and we sat there for a good twenty minutes before slowly inching forward only to find the reason for the delay was road works reducing three lanes to one. Typical!
I was a little late arriving but only by ten minutes or so and as I always have to wait at least thirty minutes before being seen it really made no difference. I need not have worried about getting my meds increased as tests show I am stable on the dose I'm currently on and increasing it wouldn't make any difference at this stage. It was explained that they would rather keep me on as low a dose as possible to avoid side effects and to give them maneuverability to increase the dose should I start to slide downwards again. Needless to say I was delighted with this decision and the fact that I didn't need to fight them to get what I wanted. We discussed the upcoming visit to Harefield and I was rather surprised to find that my case has also been passed to Papworth and Newcastle as backups. The reason, I'm told, is because my heart is currently in the best shape it can be to withstand the rigors of transplant. No one knows how long this will last and once it slips if I'll ever be in such good shape again so it is a case of striking while the iron is hot. We then discussed a range of new meds that are about to hit the market. The first to come in, sometime next year, is air stable Flolan. Now this may not seem a great leap forward as it will still mean a pump and all that goes with it. However it will cut down the time spent mixing and preparing the drug as you will be able to make up a whole weeks worth in one go and keep it in the fridge. So instead of forty minutes to an hour every night, a couple of hours once a week will be all it takes. The second big innovation is Flolan in tablet form. Trials have been going well though there is some difficulty with side effects, especially nausea. As the drug is delivered directly into the stomach I'm not surprised, however they appear to be getting on top of that now and the drug is expected to be available in two or three years time. At the end of the consultation I was told that I probably wouldn't need either of those things, intriguing, do they already know something I don't? I'm so well that they have decided not to see me again for three months, with the proviso I call them if something changes of course. Three months? I can't remember when I last had such a long break between appointments, it is great news but scary at the same time but at least it is an indication that they are no longer worried about me, well not as much anyway.
And so I look forward to next Friday and Harefield, I do hope it is good news, the doctors at the Brompton have given me renewed hope that things will start to move more quickly than they have done in the past. However, even though they are sister hospitals, they are different and may not agree on time scales. All I can do is wait and keep my fingers crossed.
Andrew got a letter from Herts Uni with his itinary for his interview day. He's going to be given a tour and get a chance to talk to students already on the course. He's trying hard not to show it but he is really excited about it and I'm so pleased for him. I just hope the interview is successful and he gets in because going through clearing can be more stressful than not getting in at all.
A trip out to the shops this afternoon didn't last long. The roads were quiet but the shops were manic and we nearly hit a child in the car park. He decide to bend down to tie his shoelace right behind our car just as we were reversing out of the space. Luckily Peter just saw him in time. Idiot!
In the news the story that caught my eye was 'Magician Paul Daniels cuts off finger'. Eww! What a horrible thing to happen but one that is all too common it seems. What got my interest was that he picked his finger up, jammed his badly damaged hand in his pocket, ran to his car and drove himself to hospital. How? If I did that I'd be rolling about in agony, I certainly would not be able to drive myself anywhere. I don't like Paul Daniels but it takes a certain type of courage to do what he did. The good news is the finger has been successfully reattached and he is well on the way to recovery. Good for him.
This afternoon I made a lasagna for tomorrow so Peter and Andrew can just stuff it in the oven as I'm working, my first eight hour shift. I wonder how I will cope.
I was a little late arriving but only by ten minutes or so and as I always have to wait at least thirty minutes before being seen it really made no difference. I need not have worried about getting my meds increased as tests show I am stable on the dose I'm currently on and increasing it wouldn't make any difference at this stage. It was explained that they would rather keep me on as low a dose as possible to avoid side effects and to give them maneuverability to increase the dose should I start to slide downwards again. Needless to say I was delighted with this decision and the fact that I didn't need to fight them to get what I wanted. We discussed the upcoming visit to Harefield and I was rather surprised to find that my case has also been passed to Papworth and Newcastle as backups. The reason, I'm told, is because my heart is currently in the best shape it can be to withstand the rigors of transplant. No one knows how long this will last and once it slips if I'll ever be in such good shape again so it is a case of striking while the iron is hot. We then discussed a range of new meds that are about to hit the market. The first to come in, sometime next year, is air stable Flolan. Now this may not seem a great leap forward as it will still mean a pump and all that goes with it. However it will cut down the time spent mixing and preparing the drug as you will be able to make up a whole weeks worth in one go and keep it in the fridge. So instead of forty minutes to an hour every night, a couple of hours once a week will be all it takes. The second big innovation is Flolan in tablet form. Trials have been going well though there is some difficulty with side effects, especially nausea. As the drug is delivered directly into the stomach I'm not surprised, however they appear to be getting on top of that now and the drug is expected to be available in two or three years time. At the end of the consultation I was told that I probably wouldn't need either of those things, intriguing, do they already know something I don't? I'm so well that they have decided not to see me again for three months, with the proviso I call them if something changes of course. Three months? I can't remember when I last had such a long break between appointments, it is great news but scary at the same time but at least it is an indication that they are no longer worried about me, well not as much anyway.
And so I look forward to next Friday and Harefield, I do hope it is good news, the doctors at the Brompton have given me renewed hope that things will start to move more quickly than they have done in the past. However, even though they are sister hospitals, they are different and may not agree on time scales. All I can do is wait and keep my fingers crossed.
Andrew got a letter from Herts Uni with his itinary for his interview day. He's going to be given a tour and get a chance to talk to students already on the course. He's trying hard not to show it but he is really excited about it and I'm so pleased for him. I just hope the interview is successful and he gets in because going through clearing can be more stressful than not getting in at all.
A trip out to the shops this afternoon didn't last long. The roads were quiet but the shops were manic and we nearly hit a child in the car park. He decide to bend down to tie his shoelace right behind our car just as we were reversing out of the space. Luckily Peter just saw him in time. Idiot!
In the news the story that caught my eye was 'Magician Paul Daniels cuts off finger'. Eww! What a horrible thing to happen but one that is all too common it seems. What got my interest was that he picked his finger up, jammed his badly damaged hand in his pocket, ran to his car and drove himself to hospital. How? If I did that I'd be rolling about in agony, I certainly would not be able to drive myself anywhere. I don't like Paul Daniels but it takes a certain type of courage to do what he did. The good news is the finger has been successfully reattached and he is well on the way to recovery. Good for him.
This afternoon I made a lasagna for tomorrow so Peter and Andrew can just stuff it in the oven as I'm working, my first eight hour shift. I wonder how I will cope.
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