Yes it is two months today that I was put on the transplant list at Papworth and hasn't time flown! It all still seems very new and, although I no longer jump quite so high when the phone goes at an odd hour, I still get my heart rate going.
Talking of which I had my regular MOT at the Royal Brompton this morning.
I had all the usual tests including ECHO and my consultant was delighted with the result. My heart continues to improve to the point that some of the readings today were actually normal. My pressures are still quite high but my right side continues to shrink, which I am told is an excellent sign that the heart is slowly repairing itself. He then ruined it a bit buy saying, 'your heart is in really good shape, for someone with your condition'. Oh well, I suppose being in 'good shape' for my 'condition' is better than being in poor shape in any condition. However he did say that my heart is now so good it should withstand a lung transplant with little problem, so that is reassuring to hear.
While I was there I was asked by Lisa, one of the specialist nurses, if I would speak to a lady whom they were considering putting on a Flolan pump. She was very reluctant and to be honest I think seeing what is involved may have done more harm than good as she more or less said no flat out. Having said all that I could tell just by looking at her that she was extremely image conscious so having a machine attached was just unthinkable to her. I'm sure she will come around in time and if her condition worsens any further. I think with such a big step you have to get to a point when the cure actually does look like the better option. I know if the pump had been offered to me while I could still get around and keep working I would have said a big fat 'no' too.
I have also put on a little more weight. I am now 51 kilos or just around 7 stone 13lbs so not far off my target weight. I had to ring Papworth with the results of my tests and for my monthly report and they were absolutely delighted, I'm told this will make a big difference to my recovery. I was told very sternly, to make sure it stayed on.
Since the big Organ Donation drive, just over a week ago now, 147,000 people have signed up, that is a massive number and I can't even begin to express my gratitude. On the other hand since I went onto the list 186 people have died waiting. That's three people a day. Lets hope that that figure comes down to two a day or just one a day or please, please God, none.
Well time to unwind and grab a nice sweet cuppa and have a catch up with Andrew, who has returned again this weekend because the heating in his rooms is playing up and 'it's bloody freezing'. Kids, just when you think you've got rid of them they keep coming back. Would I have it any other way? No!
Talking of which I had my regular MOT at the Royal Brompton this morning.
I had all the usual tests including ECHO and my consultant was delighted with the result. My heart continues to improve to the point that some of the readings today were actually normal. My pressures are still quite high but my right side continues to shrink, which I am told is an excellent sign that the heart is slowly repairing itself. He then ruined it a bit buy saying, 'your heart is in really good shape, for someone with your condition'. Oh well, I suppose being in 'good shape' for my 'condition' is better than being in poor shape in any condition. However he did say that my heart is now so good it should withstand a lung transplant with little problem, so that is reassuring to hear.
While I was there I was asked by Lisa, one of the specialist nurses, if I would speak to a lady whom they were considering putting on a Flolan pump. She was very reluctant and to be honest I think seeing what is involved may have done more harm than good as she more or less said no flat out. Having said all that I could tell just by looking at her that she was extremely image conscious so having a machine attached was just unthinkable to her. I'm sure she will come around in time and if her condition worsens any further. I think with such a big step you have to get to a point when the cure actually does look like the better option. I know if the pump had been offered to me while I could still get around and keep working I would have said a big fat 'no' too.
I have also put on a little more weight. I am now 51 kilos or just around 7 stone 13lbs so not far off my target weight. I had to ring Papworth with the results of my tests and for my monthly report and they were absolutely delighted, I'm told this will make a big difference to my recovery. I was told very sternly, to make sure it stayed on.
Since the big Organ Donation drive, just over a week ago now, 147,000 people have signed up, that is a massive number and I can't even begin to express my gratitude. On the other hand since I went onto the list 186 people have died waiting. That's three people a day. Lets hope that that figure comes down to two a day or just one a day or please, please God, none.
Well time to unwind and grab a nice sweet cuppa and have a catch up with Andrew, who has returned again this weekend because the heating in his rooms is playing up and 'it's bloody freezing'. Kids, just when you think you've got rid of them they keep coming back. Would I have it any other way? No!
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