Well it's been a bit of a week all in all.
I've spent the whole time at work worried that I was coming down with something as I found it hard to breathe and I had a bit of a cough. However it must be something in the air there because one day at home and I'm feeling better. How Strange!
Today I visited Papworth with a mixture of dread and excitement. Dread because I'm always convinced they will find something that knocks me off the transplant list. Excitement because I would be visiting Kath after my clinic.
The clinic was running late as usual and, although my appointment was for ten, it was almost eleven before I got in to see the consultant. I spent some of the time whilst waiting running around getting blood tests and x rays and the rest sorting through the magazines where I found this little beauty. I must admit I came over all childish and laughed like a drain. When I was called into see the doctor I had a hard time containing myself as I couldn't stop giggling.
Unfortunately I was sobered up quite quickly. The was some good news but there was also bad news. On the bad side he concurred with Brompton in that there had been a downward turn in the last couple of months. The doctor was not unduly concerned though as he said it was unusual that I'd remained stable for so long anyway. He approved of the plan to change and increase my medication and hoped that would be enough to render me stable for another year or so, though 'hopefully we will get you transplanted before then'. It's always that word 'hopefully' and it's getting on my nerves.
On the good side I have finally hit eight stone or approximately fifty kilos and pushed my BMI up to nineteen. Although the doctor was pleased with this he said I was still under weight and he'd like to see me add a further half a stone and push my BMI up to twenty before he'd be fully happy. My weight problems are not bad enough to exclude me from transplant but the more weight I put on prior to the operation the easier my recovery will be. It makes sense but it would be a whole lot easier if I didn't have a drug that makes me feel constantly sick. Still I'm going in the right direction so it may not be totally impossible.
Then I was off to see Kath. I was doubting being able to see her yesterday due to feeling a bit off but the tests in the clinic showed up no problems so I was allowed in. Oh my goodness, I've never seen anyone looking so healthy. If you didn't know what she'd been through these past few weeks, and just saw her in the street, you'd never guess she's just three weeks post transplant. Kath gave me a hug which unnerved me a bit, as I didn't want to hurt her by hugging back, and then we sat and chatted. I'd only been given five minutes because it wasn't official visiting time but I think we managed to stretch it out to ten or maybe fifteen minutes in the end. It was obvious from the start that Kath was really, really happy and I felt tears coming as I shared in her delight. I found the visit very moving, very inspirational and, overall, too brief. We have agreed to meet for coffee when Kath can drive again as we are not that far away from each other. I am so looking forward to that day.
On the way home, and bearing in mind my 'put on weight' order, we stopped at KFC for lunch and then Tesco's where I stocked up on sweets, crisps and Complan. Of course I also added fruit and veg to the basket and guess what will be eaten first. I just can't help myself. Still when you think back to this time last year when I was barely eating at all I've improved and that has to be a good thing overall. I'm just hoping these new meds don't upset the apple cart and put me back down again.
Well I have a can of coke and a packet of hula hoops waiting while I catch up on my soaps. More tomorrow when I will continue my tale of Canterbury.
I've spent the whole time at work worried that I was coming down with something as I found it hard to breathe and I had a bit of a cough. However it must be something in the air there because one day at home and I'm feeling better. How Strange!
Today I visited Papworth with a mixture of dread and excitement. Dread because I'm always convinced they will find something that knocks me off the transplant list. Excitement because I would be visiting Kath after my clinic.
The clinic was running late as usual and, although my appointment was for ten, it was almost eleven before I got in to see the consultant. I spent some of the time whilst waiting running around getting blood tests and x rays and the rest sorting through the magazines where I found this little beauty. I must admit I came over all childish and laughed like a drain. When I was called into see the doctor I had a hard time containing myself as I couldn't stop giggling.
Unfortunately I was sobered up quite quickly. The was some good news but there was also bad news. On the bad side he concurred with Brompton in that there had been a downward turn in the last couple of months. The doctor was not unduly concerned though as he said it was unusual that I'd remained stable for so long anyway. He approved of the plan to change and increase my medication and hoped that would be enough to render me stable for another year or so, though 'hopefully we will get you transplanted before then'. It's always that word 'hopefully' and it's getting on my nerves.
On the good side I have finally hit eight stone or approximately fifty kilos and pushed my BMI up to nineteen. Although the doctor was pleased with this he said I was still under weight and he'd like to see me add a further half a stone and push my BMI up to twenty before he'd be fully happy. My weight problems are not bad enough to exclude me from transplant but the more weight I put on prior to the operation the easier my recovery will be. It makes sense but it would be a whole lot easier if I didn't have a drug that makes me feel constantly sick. Still I'm going in the right direction so it may not be totally impossible.
Then I was off to see Kath. I was doubting being able to see her yesterday due to feeling a bit off but the tests in the clinic showed up no problems so I was allowed in. Oh my goodness, I've never seen anyone looking so healthy. If you didn't know what she'd been through these past few weeks, and just saw her in the street, you'd never guess she's just three weeks post transplant. Kath gave me a hug which unnerved me a bit, as I didn't want to hurt her by hugging back, and then we sat and chatted. I'd only been given five minutes because it wasn't official visiting time but I think we managed to stretch it out to ten or maybe fifteen minutes in the end. It was obvious from the start that Kath was really, really happy and I felt tears coming as I shared in her delight. I found the visit very moving, very inspirational and, overall, too brief. We have agreed to meet for coffee when Kath can drive again as we are not that far away from each other. I am so looking forward to that day.
On the way home, and bearing in mind my 'put on weight' order, we stopped at KFC for lunch and then Tesco's where I stocked up on sweets, crisps and Complan. Of course I also added fruit and veg to the basket and guess what will be eaten first. I just can't help myself. Still when you think back to this time last year when I was barely eating at all I've improved and that has to be a good thing overall. I'm just hoping these new meds don't upset the apple cart and put me back down again.
Well I have a can of coke and a packet of hula hoops waiting while I catch up on my soaps. More tomorrow when I will continue my tale of Canterbury.
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