Yesterday was my twenty month anniversary on the transplant list. It is looking more and more likely that I'm going to make the two year mark. To say I've been a bit down would be an understatement.
It was, therefore, with a heavy heart that I headed down the M1 at seven thirty this morning for my appointment at the Brompton. The journey itself was a breeze. Both the motorway and the center of London were unusually quiet. We arrived early and found a parking bay right outside the hospital.
First up was the dreaded ECHO. I arrived, gave my name and time of appointment only to be faced with blank looks. Luckily I had kept and brought my letter and present this with a flourish. The effect on the receptionist was remarkable, probably because I had proof that the mistake was theirs, and she called Carl my nurse specialist. According to their records my appointment had been cancelled because I was being admitted. This was news to me and Carl. Thankfully it was soon sorted and I was taken in only five minutes after my appointment time.
That over with it was back to clinic and the even more dreaded walk test. I hate doing this and always accuse my team of trying to kill me off. It was before I started the test that I got my first shock. My oxygen SATs were 94%. An amazing improvement on last time when they lingered in the mid 80's. I set off at a right old pace and was surprised when the three minute mark was called. By the time I reached six minutes I was puffing and blowing like an old steam train but still keeping a good pace. My SAT's afterwards was 88% and they went back up to 94% in under two minutes, a remarkable achievement for me. The second surprised was how far I'd walked. 250m in April, 360m today. What on earth is going on? I seem to be improving at an astonishing rate, not that I'm complaining, I'm just puzzled.
The results of my ECHO were also overall good. A lot of my measurements were normal or as near normal as you can get. My pressures inside the heart are still too damned high and my right ventricle continues to dilate but I appear to be compensating. The pumping action is still strong and efficient and I'm shifting a good amount of blood through with each beat.
So it is very good news. I appear to have stabilised again and the Veletri obviously suits me down to the ground. I still have a little bit of weight to gain and my calf muscles cramp like hell after walking but everything else is encouraging. I was told that I am now in the optimum condition for transplant. I am so 'well' that can expect the best possible outcome. This is great news but of course in order to benefit I need that call and I need it soon. The fight to get me well and stable for transplant has been won, for now. Now the battle begins to keep me there.
BUPA delivered on Wednesday exactly at the time they said they would and everything I need was there. Some things were not quite right, I've got enough Normasol to bathe in, but nothing was missed, which is the main thing.
Right more tomorrow. I've had a very busy day and now just need a cuppa and to put my feet up. More tomorrow.
First up was the dreaded ECHO. I arrived, gave my name and time of appointment only to be faced with blank looks. Luckily I had kept and brought my letter and present this with a flourish. The effect on the receptionist was remarkable, probably because I had proof that the mistake was theirs, and she called Carl my nurse specialist. According to their records my appointment had been cancelled because I was being admitted. This was news to me and Carl. Thankfully it was soon sorted and I was taken in only five minutes after my appointment time.
That over with it was back to clinic and the even more dreaded walk test. I hate doing this and always accuse my team of trying to kill me off. It was before I started the test that I got my first shock. My oxygen SATs were 94%. An amazing improvement on last time when they lingered in the mid 80's. I set off at a right old pace and was surprised when the three minute mark was called. By the time I reached six minutes I was puffing and blowing like an old steam train but still keeping a good pace. My SAT's afterwards was 88% and they went back up to 94% in under two minutes, a remarkable achievement for me. The second surprised was how far I'd walked. 250m in April, 360m today. What on earth is going on? I seem to be improving at an astonishing rate, not that I'm complaining, I'm just puzzled.
So it is very good news. I appear to have stabilised again and the Veletri obviously suits me down to the ground. I still have a little bit of weight to gain and my calf muscles cramp like hell after walking but everything else is encouraging. I was told that I am now in the optimum condition for transplant. I am so 'well' that can expect the best possible outcome. This is great news but of course in order to benefit I need that call and I need it soon. The fight to get me well and stable for transplant has been won, for now. Now the battle begins to keep me there.
BUPA delivered on Wednesday exactly at the time they said they would and everything I need was there. Some things were not quite right, I've got enough Normasol to bathe in, but nothing was missed, which is the main thing.
Right more tomorrow. I've had a very busy day and now just need a cuppa and to put my feet up. More tomorrow.
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