Things moved further and faster at the transplant clinic at Papworth this morning than they have done in the last sixteen months.
I arrived ten minutes early and for once did not have long to wait. Unusually I was show straight in to see the consultant without having all the checks with the nurse first. He had a letter from the Brompton with him and questioned me very carefully about how I was feeling, how much I could do at the moment and how much more help I needed. He then gave me a very thorough check over, which again was not what normally happens. What normally happens is they chat to me about my latest visit to the Brompton then send me off for bloods and to make an appointment for another three-four months. It is usually all over in ten minutes flat.
After a protracted examination the doctor excused himself and said he'd was going to discuss things with Dr Parmar. Worryingly he took the letter with him. Now I have no idea what is in that letter because I haven't had my copy yet but obviously something was worrying this doctor and so I began to worry.
I was even more worried when the consultant returned with Dr Parmar. Dr. Parmar asked me more or less the same questions and then sat down beside me. He explained that as I'd been so stable they had been taking their time about finding a perfect match for me, hence the long wait. However there are now signs that I am becoming unstable and that I'm taking a downward turn. They have been in touch with the Brompton and have been fully briefed as to what happened last time I took a downward turn. Although I'm not there yet the fear is that, that's where I'm heading. Last time I was saved by the Flolan, this time there is nothing else.
With that in mind Papworth have decided to list me as urgent and lower their criteria to give me a better chance. Now instead of listing for heart and lungs as the first priority they are swapping me to lungs only with a marker for heart and lungs if possible. This move will increase my chances enormously. It will be a riskier operation, as my heart isn't as good as it was, and I will need more careful management afterwards and recovery will be slightly longer. They are also no longer going to match my antibodies. I have a lot of antibodies. Women with children and a history of chest infections and previous surgery tend too, however mine are all very low level. Ideally they would match them but in my situation they can be largely 'ignored'. Again it will mean more management after surgery and I'll be at slightly higher risk of rejection but again this move will increase my chances. In short the priority has now changed to 'find a match and sort out any problems later'.
Peter and I could only sit and nod every time Dr Parmar said 'is that alright?' At one stage I swear I had my mouth hanging open. Afterwards the nurse sat with us and explained that these moves are not as bad as they sound. The priority is to get me transplanted before I become too ill to have the operation. They know that when I start to reject the medication, I get very ill very quickly so now it really is a race against time. I was ushered off to have loads of blood taken and then we just sat in the car staring at each other.
We drove to Tesco in St Neots in complete silence. Went in and grabbed a coffee and a snack and then sat down, all without saying a word. 'You look shell shocked' said Peter. 'So do you', I replied. We then couldn't stop talking. There were lots of 'I can't believe it's' and Oh my God's' but in the end we decided it had to be a good thing. We trust the doctor's at Papworth implicitly and if they say they can do this without waiting for a perfect match then why not take the chance. I can't afford to wait much longer, I certainly don't want to have to wait much longer. Yes there is more risk but the risk of doggedly waiting for that perfect match is greater, especially if it never comes.
So at the moment I'm a little bit terrified but I'm also so excited. I feel there is hope once more. There is a lot to think about and, of course, I'll have to talk the new developments over with my family but in my heart I feel I'm doing the right thing for me. And ultimately that is all that matters.
Andrew's interview went well yesterday. He's worrying a little more about it than he did the London Ambulance interview but that is probably only because he wants this one more. All we have to do now is wait as they will be sending out letters sometime next week.
So two days of travelling and one big shock has left me feeling very tired but overall much better than expected. I still haven't heard anything from the Brompton about my new drug but some how that doesn't seem so important now. As a friend pointed out, maybe I'm not destined to have this drug, maybe what's happened today is going to save me from more mucking about. I really hope she's right.
After a protracted examination the doctor excused himself and said he'd was going to discuss things with Dr Parmar. Worryingly he took the letter with him. Now I have no idea what is in that letter because I haven't had my copy yet but obviously something was worrying this doctor and so I began to worry.
I was even more worried when the consultant returned with Dr Parmar. Dr. Parmar asked me more or less the same questions and then sat down beside me. He explained that as I'd been so stable they had been taking their time about finding a perfect match for me, hence the long wait. However there are now signs that I am becoming unstable and that I'm taking a downward turn. They have been in touch with the Brompton and have been fully briefed as to what happened last time I took a downward turn. Although I'm not there yet the fear is that, that's where I'm heading. Last time I was saved by the Flolan, this time there is nothing else.
Peter and I could only sit and nod every time Dr Parmar said 'is that alright?' At one stage I swear I had my mouth hanging open. Afterwards the nurse sat with us and explained that these moves are not as bad as they sound. The priority is to get me transplanted before I become too ill to have the operation. They know that when I start to reject the medication, I get very ill very quickly so now it really is a race against time. I was ushered off to have loads of blood taken and then we just sat in the car staring at each other.
So at the moment I'm a little bit terrified but I'm also so excited. I feel there is hope once more. There is a lot to think about and, of course, I'll have to talk the new developments over with my family but in my heart I feel I'm doing the right thing for me. And ultimately that is all that matters.
Andrew's interview went well yesterday. He's worrying a little more about it than he did the London Ambulance interview but that is probably only because he wants this one more. All we have to do now is wait as they will be sending out letters sometime next week.
So two days of travelling and one big shock has left me feeling very tired but overall much better than expected. I still haven't heard anything from the Brompton about my new drug but some how that doesn't seem so important now. As a friend pointed out, maybe I'm not destined to have this drug, maybe what's happened today is going to save me from more mucking about. I really hope she's right.
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