Today has been a good day. Pity the night didn't match. I don't know if I was worried about increasing the dose or whether I was too hot or just not tired enough but I had difficulty dropping off to sleep and was awake around four. I didn't feel tired for most of the day so I can only think I just wasn't tired enough to have a good night. I hate having a disturbed night just before a hospital visit because you want to feel 'with it' enough to take in what is being said and remember the questions you want to ask.
First stop was to see my nurse specialist to have my medication increased. He was stunned by how much I've improved over the last seven days and the improvement was reflected in last week's tests. Everything seems to have improved but the biggest change was in my BNP (no not British National Party) levels. This is a measure of how much strain your heart is under and at my worst the levels reached 215, last week my reading was 7. A normal person's reading would be around 4 or 5 so I'm probably as good now as I'm ever going to be. Naturally I am as pleased as punch about the result. They will repeat the test next week along with an echo to confirm that my heart is pumping more efficiently and of course will increase the dose again.
We also had a long chat about transplantation, my assessment has been on hold while my meds have been swapped so now I'm stable I have to be reassessed. The irony is that I still need to be 'on the list' because it is part of the condition my PCT has laid out for me having this treatment. However Carl warned me that as I have responded so well to treatment I might currently be too well at the moment. Sod's law strikes again! Still it is better to be too well for a transplant than too poorly, how they will square it with the PCT though is a tricky one. I'm sure they will come up with a compromise. The other thing Carl warned me about and I was really surprised to learn this, women are more likely to be turned down for transplant than men. Now before the feminists amongst you get your knickers in a twist, not all women just those that have had children. The reason is that when you are pregnant your body naturally produces antibodies, unfortunately these antibodies remain in the system for life and the more pregnancies the more antibodies. Normally they don't cause any harm but if you have a high level they can cause real problems with rejection. You learn something new everyday. This is not good news for me, having been pregnant five times I've probably got a huge amount of the things. They will do a test to find out at the transplant clinic so I'll tackle that one when I get to it.
After Carl it was off to see the consultant. He was equally pleased to see the improvement and will be writing to the PCT to tell them that I am benefiting from the treatment. Hopefully they will then agree to fund it for at least the next twelve months. He even gave me the go ahead to return to work but with a warning to take it very slowly and if I have any problems stop. I don't think I'll have any problems following that advice. I've had a real scare this time and NEVER want to be that ill again. I enjoy work but I don't love it enough to kill myself. I wonder how work will view my new laid back approach?
So on to the mental and emotional side. I was an hour late for my appointment with my hypnotherapist after finishing with Carl and the consultant, fortunately she was also late because of problems on the tube due to the strike. After a brief chat we both agreed that, as I'd gone through the procedure and my fear of needles is considerably less than when I started the sessions, there really wasn't any point in continuing. We left things open ended, she has given me her email and phone number and made me promise to ring her if I needed anymore help. I can't say, hand on heart, that the sessions were a total waste of time. I am more relaxed around needles now and when I take time out I can really shut off and relax instead of letting little worries encroach. However I don't think I'm a good candidate for hypnosis as I'm far to sceptical about it. And if you don't fully believe in something it will never work. I'm glad I did it though.
I don't know if it was the strike or just luck but traffic was really light today so we zoomed in and out. Different story on the way home on the M1 though. Bad accident at junction 11 causing massive tailbacks. We jumped ship at junction 8 and came home via Hemel Hempstead. It was slower but better than sitting in a traffic jam.
Rest day tomorrow, well rest and stress day. Andy Murray in the semi finals, will my blood pressure stand it?
First stop was to see my nurse specialist to have my medication increased. He was stunned by how much I've improved over the last seven days and the improvement was reflected in last week's tests. Everything seems to have improved but the biggest change was in my BNP (no not British National Party) levels. This is a measure of how much strain your heart is under and at my worst the levels reached 215, last week my reading was 7. A normal person's reading would be around 4 or 5 so I'm probably as good now as I'm ever going to be. Naturally I am as pleased as punch about the result. They will repeat the test next week along with an echo to confirm that my heart is pumping more efficiently and of course will increase the dose again.
We also had a long chat about transplantation, my assessment has been on hold while my meds have been swapped so now I'm stable I have to be reassessed. The irony is that I still need to be 'on the list' because it is part of the condition my PCT has laid out for me having this treatment. However Carl warned me that as I have responded so well to treatment I might currently be too well at the moment. Sod's law strikes again! Still it is better to be too well for a transplant than too poorly, how they will square it with the PCT though is a tricky one. I'm sure they will come up with a compromise. The other thing Carl warned me about and I was really surprised to learn this, women are more likely to be turned down for transplant than men. Now before the feminists amongst you get your knickers in a twist, not all women just those that have had children. The reason is that when you are pregnant your body naturally produces antibodies, unfortunately these antibodies remain in the system for life and the more pregnancies the more antibodies. Normally they don't cause any harm but if you have a high level they can cause real problems with rejection. You learn something new everyday. This is not good news for me, having been pregnant five times I've probably got a huge amount of the things. They will do a test to find out at the transplant clinic so I'll tackle that one when I get to it.
After Carl it was off to see the consultant. He was equally pleased to see the improvement and will be writing to the PCT to tell them that I am benefiting from the treatment. Hopefully they will then agree to fund it for at least the next twelve months. He even gave me the go ahead to return to work but with a warning to take it very slowly and if I have any problems stop. I don't think I'll have any problems following that advice. I've had a real scare this time and NEVER want to be that ill again. I enjoy work but I don't love it enough to kill myself. I wonder how work will view my new laid back approach?
So on to the mental and emotional side. I was an hour late for my appointment with my hypnotherapist after finishing with Carl and the consultant, fortunately she was also late because of problems on the tube due to the strike. After a brief chat we both agreed that, as I'd gone through the procedure and my fear of needles is considerably less than when I started the sessions, there really wasn't any point in continuing. We left things open ended, she has given me her email and phone number and made me promise to ring her if I needed anymore help. I can't say, hand on heart, that the sessions were a total waste of time. I am more relaxed around needles now and when I take time out I can really shut off and relax instead of letting little worries encroach. However I don't think I'm a good candidate for hypnosis as I'm far to sceptical about it. And if you don't fully believe in something it will never work. I'm glad I did it though.
I don't know if it was the strike or just luck but traffic was really light today so we zoomed in and out. Different story on the way home on the M1 though. Bad accident at junction 11 causing massive tailbacks. We jumped ship at junction 8 and came home via Hemel Hempstead. It was slower but better than sitting in a traffic jam.
Rest day tomorrow, well rest and stress day. Andy Murray in the semi finals, will my blood pressure stand it?
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