It was Royal Brompton day and I had the works today, blood tests, ECG, X-ray and a thorough going over by the consultant who admitted to being 'worried' about me. I've lost a stack of weight and am hovering around the 45/46 kilo mark, when I started this treatment I was 54 kilos, I have no idea what these figures are in stones or pounds so don't ask. So the first task was how to stop me vomiting and get me eating again. After a long chat with my palliative care team they rang my GP and had a long conversation with him in the hope that he can monitor me more closely and adjust my sickness tabs as and when I need them. I have an appointment on Monday with my GP to discuss what can be done.
Second on the agenda was my chest infection which has definitely NOT gone away. Apparently my chest sounds absolutely full of gunk and the x-ray showed that both lungs are very infected, but the good news is that it hasn't turned into pneumonia. They have put me on a ten day course of very strong antibiotics which, wait for it, may make me feel sick but I must keep taking them. They wanted to bring me into hospital until the antibiotics kicked in but I refused, I figured I was more likely to pick something else up in hospital than at home. More good news is that the ECG shows that my heart is behaving itself, must be thankful for small mercies.
Then we discussed increasing the dose of Flolan but all present agreed that until they get the sickness under control there would be no point as we all know going beyond the current dose has not gone smoothly up to now. As I am so poorly anyway they decided to give it a miss and will try again once the infection has cleared up and I'm on sickness tablets that actually work. They are thinking that the chest infection may be making the sickness worse so once that clears up I might start feeling better anyway.
Then we came back to the transplant. I get the impression that they are beginning to get concerned that I'll never be able to increase my dose of Flolan and if so then the transplant becomes even more essential as there is nothing else I can try. They are going to contact Harefield next week and discuss my current situation. Whether that will push me further up the list who knows but it is nice to know they are pushing for me even if it does mean they might be beginning to feel they can do no more for me treatment wise. So it's back again in October for another drug increase, let's hope this time it actually works. In the mean time I have to rest, eat little but often to keep my strength up and keep taking the tablets.
When we arrived home we found Andrew sitting in the porch reading, he'd popped home during the day to pick something up and managed to lock himself out. Luckily we were only half an hour behind him so he didn't have to wait long, thank goodness it wasn't cold or raining.
It is the village carnival tomorrow and the weather promises to be foul, which is a pity because I quite fancied getting my camera out and taking some pictures. To be honest it is never very good and as the theme is 'The Olympics' one year early I'm not sure this year is going to be any improvement. However being close to home it would be a good opportunity to get out in the fresh air again.
I've taken my new tablets and am delighted to report that so far there have been no adverse effects, that's a first. Maybe, just maybe this time I can actually get rid of this damned infection and start feeling human again.
Second on the agenda was my chest infection which has definitely NOT gone away. Apparently my chest sounds absolutely full of gunk and the x-ray showed that both lungs are very infected, but the good news is that it hasn't turned into pneumonia. They have put me on a ten day course of very strong antibiotics which, wait for it, may make me feel sick but I must keep taking them. They wanted to bring me into hospital until the antibiotics kicked in but I refused, I figured I was more likely to pick something else up in hospital than at home. More good news is that the ECG shows that my heart is behaving itself, must be thankful for small mercies.
Then we discussed increasing the dose of Flolan but all present agreed that until they get the sickness under control there would be no point as we all know going beyond the current dose has not gone smoothly up to now. As I am so poorly anyway they decided to give it a miss and will try again once the infection has cleared up and I'm on sickness tablets that actually work. They are thinking that the chest infection may be making the sickness worse so once that clears up I might start feeling better anyway.
Then we came back to the transplant. I get the impression that they are beginning to get concerned that I'll never be able to increase my dose of Flolan and if so then the transplant becomes even more essential as there is nothing else I can try. They are going to contact Harefield next week and discuss my current situation. Whether that will push me further up the list who knows but it is nice to know they are pushing for me even if it does mean they might be beginning to feel they can do no more for me treatment wise. So it's back again in October for another drug increase, let's hope this time it actually works. In the mean time I have to rest, eat little but often to keep my strength up and keep taking the tablets.
When we arrived home we found Andrew sitting in the porch reading, he'd popped home during the day to pick something up and managed to lock himself out. Luckily we were only half an hour behind him so he didn't have to wait long, thank goodness it wasn't cold or raining.
It is the village carnival tomorrow and the weather promises to be foul, which is a pity because I quite fancied getting my camera out and taking some pictures. To be honest it is never very good and as the theme is 'The Olympics' one year early I'm not sure this year is going to be any improvement. However being close to home it would be a good opportunity to get out in the fresh air again.
I've taken my new tablets and am delighted to report that so far there have been no adverse effects, that's a first. Maybe, just maybe this time I can actually get rid of this damned infection and start feeling human again.
No comments:
Post a Comment