Things have taken a downward turn over the last few days. My breathing is severely compromised, even on oxygen and this time it isn't down to a chest infection. I had similar symptoms about seven months ago when the drug I was on then, Iloprost, just suddenly stopped working for me. Obviously I am now terrified that the Flolan is going the same way. Logically there are two things they can do, increase the dose in the hope it is the amount I'm getting and not just the drug I am getting used to, or find something else, which will be tricky as there is nothing else. What scares me most is that unless I can be stablised the transplant if off as they won't do it if my heart starts to fail as I'll never make it through the surgery. Needless to say I am very down and very scared at the moment. I e-mailed my specialist nurse first thing this morning in the hope he will arrange to see me quickly, if I don't hear anything by lunchtime I will give him a call. I don't like phoning him as he is really busy but I think on this occasion I'm justified.
Had a call back at around eleven, they want me to go in for a couple of days to try and stabilise me but so far haven't been able to find me a bed. As soon as they do I'm going in, I'm not happy about this but I'd rather spend a few days in hospital and get better permanently than feel like this for weeks on end. Don't know what work are going to think as I've only just gone back after my last chest infection, they must be as pissed off as I am.
Finally got a call at three, they found a bed for me on the high dependancy unit so I've been whisked in for urgent assessment. The journey in was quite quick so we arrived around four thirty and after being shown to my bed I was immediately surrounded by doctors taking blood, doing ECG;s and looking for signs of fluid retention, which is a common sign of heart failure. Then it was ECHO time and a bit of good news, although the pressures in my lungs have increased slightly my heart is still in good shape with no sign of failure so as yet my transplant is not compromised. Tomorrow I'm going to have a CT scan and possibly an x ray to see if there is any infection hanging around that might be causing all this. At the moment there are two possible treatments, I could end up having either or both depending on what is found. My Flolan dose is definitely going to be increased, the thought is my body has got used to the low dose I'm on so it needs to be increased to a higher level. Given that they have tried this twice already and each time I've been terribly sick, they are going to do it while I am here so they can experiment to find which anti sickness treatment will work best for me. The other treatment will be IV antibiotics to try and clear the infection once and for all. Again this must be done while I'm in as I might have an allergic reaction. Either way it doesn't look as though I'm going to get out of here by the weekend.
I will keep you updated.
Had a call back at around eleven, they want me to go in for a couple of days to try and stabilise me but so far haven't been able to find me a bed. As soon as they do I'm going in, I'm not happy about this but I'd rather spend a few days in hospital and get better permanently than feel like this for weeks on end. Don't know what work are going to think as I've only just gone back after my last chest infection, they must be as pissed off as I am.
Finally got a call at three, they found a bed for me on the high dependancy unit so I've been whisked in for urgent assessment. The journey in was quite quick so we arrived around four thirty and after being shown to my bed I was immediately surrounded by doctors taking blood, doing ECG;s and looking for signs of fluid retention, which is a common sign of heart failure. Then it was ECHO time and a bit of good news, although the pressures in my lungs have increased slightly my heart is still in good shape with no sign of failure so as yet my transplant is not compromised. Tomorrow I'm going to have a CT scan and possibly an x ray to see if there is any infection hanging around that might be causing all this. At the moment there are two possible treatments, I could end up having either or both depending on what is found. My Flolan dose is definitely going to be increased, the thought is my body has got used to the low dose I'm on so it needs to be increased to a higher level. Given that they have tried this twice already and each time I've been terribly sick, they are going to do it while I am here so they can experiment to find which anti sickness treatment will work best for me. The other treatment will be IV antibiotics to try and clear the infection once and for all. Again this must be done while I'm in as I might have an allergic reaction. Either way it doesn't look as though I'm going to get out of here by the weekend.
I will keep you updated.
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