Well the real reason for being put in a side room became apparent this morning when one month's supply of drugs arrived. Three boxes big enough to house mircowaves and three enormous bags. They are now stacked up in the corner waiting for tomorrow. The promised plasma tv sized boxes did not materialise because they had run out, hence the bags. Maybe that's as well as we would never have fitted them into the car. I have had to ring Peter and warn him NOT to bring his little sports car, we need a boot, a very big boot.
Was allowed off the ward for a stroll down to the newsagents this afternoon. Managed it a lot easier than when I first came in and only had to stop once instead of the half dozen or so times previously. I am now on half dose but the plan of action has changed again. I am to go back early Wednesday to have the dose increased and to see the consultant but only for the day. I will then be given detailed instructions on how to increase the dose myself and will do that the following Wednesday then I'll have to be seen by the doc a week later. They have decide to do a gradual increase instead of the quick ramp up they had planned as they believe this will be the best way of minimising any side effects.
Had my first proper bath this morning, I wasn't allowed to do this in ICU and had to have a 'good wash' instead. No real problems but balancing the machine on the bin and trying not to let the line dangle in the water was trickier than I thought it would be. I washed my hair in the sink, again not ideal, but felt so much better afterwards. I have to wait another week before I can have a shower to make sure my wounds are completely healed. Even then I have to wrap the line in a special cling film to stop the connectors getting wet as this could cause infection. I'm going to have to work out a way of doing this things but I'm sure I will get used to it.
Been given the go ahead to go home tomorrow by the consultant himself, I cannot wait, I know they said I could yesterday but he confirmed it this morning. As they have said I can go. of course I want to go NOW! The consultant also informed me that I am now on Papworth's transplant list as well as Harefield's. I didn't think individual hospitals had their own lists, I thought it was a national thing, maybe not, I will have to find out.
Not taking my Iloprost has really been weird today, I have been suddenly noticing the time, panicking because I am late and then realising I don't have to take it. Preparing the infusion still takes me about 3/4 of an hour but at least it is only once a day, already I see a benefit. The downside is that all this extra time on my hands means I am bored. I'm quite frankly fed up with reading, listening to music and surfing the net. Funny how doing the things you usually look forward to become a burden if you cannot do anything else.
One more sleep!!!!!
Was allowed off the ward for a stroll down to the newsagents this afternoon. Managed it a lot easier than when I first came in and only had to stop once instead of the half dozen or so times previously. I am now on half dose but the plan of action has changed again. I am to go back early Wednesday to have the dose increased and to see the consultant but only for the day. I will then be given detailed instructions on how to increase the dose myself and will do that the following Wednesday then I'll have to be seen by the doc a week later. They have decide to do a gradual increase instead of the quick ramp up they had planned as they believe this will be the best way of minimising any side effects.
Had my first proper bath this morning, I wasn't allowed to do this in ICU and had to have a 'good wash' instead. No real problems but balancing the machine on the bin and trying not to let the line dangle in the water was trickier than I thought it would be. I washed my hair in the sink, again not ideal, but felt so much better afterwards. I have to wait another week before I can have a shower to make sure my wounds are completely healed. Even then I have to wrap the line in a special cling film to stop the connectors getting wet as this could cause infection. I'm going to have to work out a way of doing this things but I'm sure I will get used to it.
Been given the go ahead to go home tomorrow by the consultant himself, I cannot wait, I know they said I could yesterday but he confirmed it this morning. As they have said I can go. of course I want to go NOW! The consultant also informed me that I am now on Papworth's transplant list as well as Harefield's. I didn't think individual hospitals had their own lists, I thought it was a national thing, maybe not, I will have to find out.
Not taking my Iloprost has really been weird today, I have been suddenly noticing the time, panicking because I am late and then realising I don't have to take it. Preparing the infusion still takes me about 3/4 of an hour but at least it is only once a day, already I see a benefit. The downside is that all this extra time on my hands means I am bored. I'm quite frankly fed up with reading, listening to music and surfing the net. Funny how doing the things you usually look forward to become a burden if you cannot do anything else.
One more sleep!!!!!
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