This post was going to describe how I saw my consultant this afternoon and how he told me that after several phone calls to the PCT they had promised to let him know about funding by the end of play on Monday 6th June. I wasn't happy but at least I'd only have the weekend to wait and the end was in sight. However just as I'd started to write everything down an email came through to say that funding has been approved. The hospital is now trying to find an early slot in theatre, hopefully next week so the waiting does go on but at least there is now light at the end of, what has been, a very long tunnel.
I have to say that I usually enjoy the trip into London to visit the Brompton but today was a nightmare. For a start we took the wrong car, we took Peter's which does not have air conditioning instead of mine which does. Big mistake, it was boiling and we had to have the windows open to keep cool and in the stop go traffic the heat and exhaust fumes were terrible. Add to that drivers doing some very silly things because the heat was making them lose concentration and you get an extremely stressful journey.
My hypnotherapist was very pleased with the progress I reported and we were both eager to build on the success. We talked a lot about how things that happen in the past can have a big influence on how you approach things in the present even if you don't remember the event. She told me that one of the ways to control this is to use logical thinking, so we did what she called a zig zag argument. On the left side of a piece of paper I had to write down what I was afraid of. On the right side arguments to counter the fear. In effect you are arguing with yourself, trying to get yourself to realise how irrational you are being. Once I'd written my argument down we did the relaxtion bit and I was able to remember a bit more about my illness when I was little. She says that the trick to sorting this fear out is to put myself in the place of the little girl I was and then view the event as the adult I am now and give the little girl me advice and reassurance. Sounds weird but I really hope it works as I will be putting it to the test very soon. At the end of the session she gave me a book to read called 'think your way to happiness.' I'm to pay attention to the chapter on anxiety and fear.
As we were leaving we ran into my consultant and my nurse specialist, they apologised and told me how many times they had rung the PCT. My consultant said he'd have hoped to have got me all done and dusted by now and he seemed just as frustraited about the situation as I am. Thankfully we both had cause to celebrated later on.
So as I finish writing this blog I feel a whirl of emotions. I'm really pleased that I can have the drugs I need. I'm frustrated because I still have to wait, this time for a theatre slot. I'm worried that the drug might not suit me after all this and I'm anxious about the seven to ten days I'm going to have to spend in hospital. The last will be the most difficult. Being so far from home I don't get any visitors and that makes things more difficult to cope with because I have no one to share the days events with or discusss something that is worrying me. Peter will visit when he can but it is too far to expect him to come up more than once or twice during a stay of that length. In the end though it will be worth it because I will get my life back.
The book is doing quite well though I seem to be more popular in American than over here.
Still waiting for.....
News from the Brompton about a theatre slot
News from Harefield about transplant
News from the DWP regarding my DLA claim
News from Halfords regarding my complaint.
I have to say that I usually enjoy the trip into London to visit the Brompton but today was a nightmare. For a start we took the wrong car, we took Peter's which does not have air conditioning instead of mine which does. Big mistake, it was boiling and we had to have the windows open to keep cool and in the stop go traffic the heat and exhaust fumes were terrible. Add to that drivers doing some very silly things because the heat was making them lose concentration and you get an extremely stressful journey.
My hypnotherapist was very pleased with the progress I reported and we were both eager to build on the success. We talked a lot about how things that happen in the past can have a big influence on how you approach things in the present even if you don't remember the event. She told me that one of the ways to control this is to use logical thinking, so we did what she called a zig zag argument. On the left side of a piece of paper I had to write down what I was afraid of. On the right side arguments to counter the fear. In effect you are arguing with yourself, trying to get yourself to realise how irrational you are being. Once I'd written my argument down we did the relaxtion bit and I was able to remember a bit more about my illness when I was little. She says that the trick to sorting this fear out is to put myself in the place of the little girl I was and then view the event as the adult I am now and give the little girl me advice and reassurance. Sounds weird but I really hope it works as I will be putting it to the test very soon. At the end of the session she gave me a book to read called 'think your way to happiness.' I'm to pay attention to the chapter on anxiety and fear.
As we were leaving we ran into my consultant and my nurse specialist, they apologised and told me how many times they had rung the PCT. My consultant said he'd have hoped to have got me all done and dusted by now and he seemed just as frustraited about the situation as I am. Thankfully we both had cause to celebrated later on.
So as I finish writing this blog I feel a whirl of emotions. I'm really pleased that I can have the drugs I need. I'm frustrated because I still have to wait, this time for a theatre slot. I'm worried that the drug might not suit me after all this and I'm anxious about the seven to ten days I'm going to have to spend in hospital. The last will be the most difficult. Being so far from home I don't get any visitors and that makes things more difficult to cope with because I have no one to share the days events with or discusss something that is worrying me. Peter will visit when he can but it is too far to expect him to come up more than once or twice during a stay of that length. In the end though it will be worth it because I will get my life back.
The book is doing quite well though I seem to be more popular in American than over here.
Still waiting for.....
News from the Brompton about a theatre slot
News from Harefield about transplant
News from the DWP regarding my DLA claim
News from Halfords regarding my complaint.
So pleased to hear that you have got PCT funding.
ReplyDeleteI know only too well that the waiting for an answer can be very stressful. Five years ago I had to wait 6 weeks for an answer on the funding of Sildenafil.
We finally got approval and had to attend the PH centre some 200 miles away in mid-December to be started on the treatment.
On admission to the ward they took my BP among other things, and decided it was below the lower limit for starting Sildenafil treatment!
The only other option was the more expensive Bosentan, for which PCT approval would once more be required.
Fortunately my consultant was very good and spent the next 6 hours making calls to the PCT until she was able to speak to the exec officer who had sufficient signing power to authorise the change.
Hope your visit to Brompton goes more smoothly than that.
Best wishes
John
Thanks John, I'm hopeful that there will be no more hiccups. Wouldn't having PH be so much less stressful without PCT's?
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