I am completely gob smacked!
Had a check up at the Brompton today during which I had an ECHO and an ECG and some blood tests. I've been feeling rough this last week with a cold and a chest infection so was not expecting great results. If anything I was expecting things to come back rather worse than usual. After having the tests I sat waiting to see my consultant and bracing myself for the results. My consultant was all grins when I entered the room and announced that he had some really good news for me. First he showed my some of the film from my ECHO and explained that there had been a significant change in my heart, for the better! The right side of my heart has been huge but today's ECHO shows that the right ventricle has actually shrunk in size and is now almost the same size as my left ventricle (the right is smaller than the left in healthy people). Worryingly he has no idea how this has happened but is cock-a-hoop that it has. He also helpfully pointed out a small wriggly thing flapping away in a corner, "that's your catheter", eww I'd rather have not known. The second bit of good news was that my BNP reading is right down and is now a comfortable 5. The BNP is a chemical produced by the heart when under stress. Healthy people have readings between 1 and 4 so a 5 for me is brilliant especially as most PH patients have readings around the 50 mark. For me this is an amazing result given that before I went on the Flolan treatment my readings were off the scale at 215. And finally I got my SAT's results (the amount of oxygen in the blood) and that was an amazing 91%. I'm usually around 84%, healthy people are between 100% and 97%. To say I came out reeling in shock would be an understatement. A couple of months ago things were looking quite bleak, there had been improvement but not as much as hoped. Now it all seems to have happened at once. Might just stop moaning about having to carry the damned pump around with me, it is obviously working. There was a little bit of bad news though and that is that I'm still losing weight but not so fast. Maybe that will also improve with time and with Christmas eating to look forward too maybe sooner than I hoped.
Woke up to a white world this morning and it was still snowing heavily when we left for the drive into London. I dug out my thermals for the first time since last year and layered myself up as I really feel the cold. The drive in was horrible until we hit the M25 turn off and then the snow just magically disappeared. By the time we reached the Brompton it was dry and the sun was trying to come out. Had a bit of excitement on the way. We usually drive through the embassy area of London to get to the hospital as it is quicker but today the approach road was blocked and there were police cars everywhere and more piling into the area with lights and sirens going. No idea what was going on but it meant a long detour but we still arrived on time. Driving back we had bright sunshine and by the time we arrived home the snow had all but gone, just a few patches in the fields. The forecast says we are going to get a further four inches over the weekend. Now I'm safely at home it can do what it wants. I love the snow as long as I don't have to travel in it.
My cold has improved and I'm feeling more human again. I've got rid of the headache though my eyes are still sore and my sinuses ache. My throat has calmed down and of course my chest has stopped aching and my breathing has improved. with a bit of luck I'll be completely clear by Christmas itself.
Andrew broke up from school for Christmas today. He can't relax though as the first part of his A level exams are at the end of January. He has had a bit of a moan about all the revision he has to do over the holidays. I am amazed at how short sighted teenagers are these days. He wants to go to UNI and has just sent off his UCAS forms. He knows that to get a place he has to get his predicted grades or better and to get better he has to work for it and yet it is all such an inconvenience. Don't get me wrong, Andrew will knuckle down and do the work, he has a goal and once he's got a goal he is very focused. However he'll make sure I know he's doing it by moaning about it, a lot. Part of the problem is the amount of distraction there is these days. When I was studying for my A levels we didn't have things such as facebook, gaming or instant messaging so it was easier to shut off for a couple of hours. I will put up with the moaning and offer gentle encouragement and hope for the best.
Laurence will be calling around briefly tomorrow he is spending the night with friends in London so will be leaving his car at ours. He has promised to come to tea on Sunday so I will be baking again. I'm going to stick to the tried and true though and will be making my chocolate fudge cake, the one confection that I always manage to get right.
Tomorrow is the great wrap. I'm commandeering the dining room, putting an old film on the TV and with the aid of some mince pies and a couple of Baileys will create the perfect parcels. Well that's the plan and we all know what tends to happen to them.
Had a check up at the Brompton today during which I had an ECHO and an ECG and some blood tests. I've been feeling rough this last week with a cold and a chest infection so was not expecting great results. If anything I was expecting things to come back rather worse than usual. After having the tests I sat waiting to see my consultant and bracing myself for the results. My consultant was all grins when I entered the room and announced that he had some really good news for me. First he showed my some of the film from my ECHO and explained that there had been a significant change in my heart, for the better! The right side of my heart has been huge but today's ECHO shows that the right ventricle has actually shrunk in size and is now almost the same size as my left ventricle (the right is smaller than the left in healthy people). Worryingly he has no idea how this has happened but is cock-a-hoop that it has. He also helpfully pointed out a small wriggly thing flapping away in a corner, "that's your catheter", eww I'd rather have not known. The second bit of good news was that my BNP reading is right down and is now a comfortable 5. The BNP is a chemical produced by the heart when under stress. Healthy people have readings between 1 and 4 so a 5 for me is brilliant especially as most PH patients have readings around the 50 mark. For me this is an amazing result given that before I went on the Flolan treatment my readings were off the scale at 215. And finally I got my SAT's results (the amount of oxygen in the blood) and that was an amazing 91%. I'm usually around 84%, healthy people are between 100% and 97%. To say I came out reeling in shock would be an understatement. A couple of months ago things were looking quite bleak, there had been improvement but not as much as hoped. Now it all seems to have happened at once. Might just stop moaning about having to carry the damned pump around with me, it is obviously working. There was a little bit of bad news though and that is that I'm still losing weight but not so fast. Maybe that will also improve with time and with Christmas eating to look forward too maybe sooner than I hoped.
Woke up to a white world this morning and it was still snowing heavily when we left for the drive into London. I dug out my thermals for the first time since last year and layered myself up as I really feel the cold. The drive in was horrible until we hit the M25 turn off and then the snow just magically disappeared. By the time we reached the Brompton it was dry and the sun was trying to come out. Had a bit of excitement on the way. We usually drive through the embassy area of London to get to the hospital as it is quicker but today the approach road was blocked and there were police cars everywhere and more piling into the area with lights and sirens going. No idea what was going on but it meant a long detour but we still arrived on time. Driving back we had bright sunshine and by the time we arrived home the snow had all but gone, just a few patches in the fields. The forecast says we are going to get a further four inches over the weekend. Now I'm safely at home it can do what it wants. I love the snow as long as I don't have to travel in it.
My cold has improved and I'm feeling more human again. I've got rid of the headache though my eyes are still sore and my sinuses ache. My throat has calmed down and of course my chest has stopped aching and my breathing has improved. with a bit of luck I'll be completely clear by Christmas itself.
Andrew broke up from school for Christmas today. He can't relax though as the first part of his A level exams are at the end of January. He has had a bit of a moan about all the revision he has to do over the holidays. I am amazed at how short sighted teenagers are these days. He wants to go to UNI and has just sent off his UCAS forms. He knows that to get a place he has to get his predicted grades or better and to get better he has to work for it and yet it is all such an inconvenience. Don't get me wrong, Andrew will knuckle down and do the work, he has a goal and once he's got a goal he is very focused. However he'll make sure I know he's doing it by moaning about it, a lot. Part of the problem is the amount of distraction there is these days. When I was studying for my A levels we didn't have things such as facebook, gaming or instant messaging so it was easier to shut off for a couple of hours. I will put up with the moaning and offer gentle encouragement and hope for the best.
Laurence will be calling around briefly tomorrow he is spending the night with friends in London so will be leaving his car at ours. He has promised to come to tea on Sunday so I will be baking again. I'm going to stick to the tried and true though and will be making my chocolate fudge cake, the one confection that I always manage to get right.
Tomorrow is the great wrap. I'm commandeering the dining room, putting an old film on the TV and with the aid of some mince pies and a couple of Baileys will create the perfect parcels. Well that's the plan and we all know what tends to happen to them.
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