I should have been watching Andy Murray in the Queen's Club finals but the weather had other ideas. it then got above itself during the Canadian GP but at least Button won, in the end. Apart from that Sunday had to be the most boring day ever.
Today was different, today had so much going on I feel completely washed out. Started out with a tutorial on how to prepared the drug, how to string all the lines together and how to set up the pump. First surprise of the day, the pump is a lot bigger and a lot heavier than I thought it would be . Setting everything up is complicated and time consuming and I'm wondering if I'm actually going to be able to manage it all. This afternoon all thoughts of watching the tennis were scuppered because I had to do it all again, without help but following a list of written instructions, while my nurse specialist watched. It appears that none of the nurses on the ward are trained to do this so I'm going to have to do it all myself. I managed without a blip so he was satisfied that as long as I followed the instructions I should be fine. The whole thing took me at least forty minutes but I'm told I will get more confidant as I get used to it. The worst bit for me was handling the needles. Although they are only used to extract the drug from the bottle handling them made me shake, which slowed me up. It seems a terrible effort but when weighed against 20 minutes out of my day six times a day on the Iloprost I suppose it isn't much really. I will get used to it, eventually.
I am starting the drug tomorrow as ICU did not have a free bed today. I don't know what they will do if a bed still isn't available, I'm sure they will think of something though, my nurse specialist said if it came to the crunch they will have to give it on the ward and he would sit with me until he was sure there were no ill effects.
A more happy circumstance was a visit from Peter and Laurence, they arrived just in time to see my run through and were amazed by how complicated it was. Andrew was banned as he has something which looks suspiciously like tonsilitis. He is off to the doc's tomorrow to get checked out. It will be awful if he has it, I remember getting it at his age and it felt like my thorat was full of glass. I feel bad that I cannot be there to give him a hug.
Today was different, today had so much going on I feel completely washed out. Started out with a tutorial on how to prepared the drug, how to string all the lines together and how to set up the pump. First surprise of the day, the pump is a lot bigger and a lot heavier than I thought it would be . Setting everything up is complicated and time consuming and I'm wondering if I'm actually going to be able to manage it all. This afternoon all thoughts of watching the tennis were scuppered because I had to do it all again, without help but following a list of written instructions, while my nurse specialist watched. It appears that none of the nurses on the ward are trained to do this so I'm going to have to do it all myself. I managed without a blip so he was satisfied that as long as I followed the instructions I should be fine. The whole thing took me at least forty minutes but I'm told I will get more confidant as I get used to it. The worst bit for me was handling the needles. Although they are only used to extract the drug from the bottle handling them made me shake, which slowed me up. It seems a terrible effort but when weighed against 20 minutes out of my day six times a day on the Iloprost I suppose it isn't much really. I will get used to it, eventually.
I am starting the drug tomorrow as ICU did not have a free bed today. I don't know what they will do if a bed still isn't available, I'm sure they will think of something though, my nurse specialist said if it came to the crunch they will have to give it on the ward and he would sit with me until he was sure there were no ill effects.
A more happy circumstance was a visit from Peter and Laurence, they arrived just in time to see my run through and were amazed by how complicated it was. Andrew was banned as he has something which looks suspiciously like tonsilitis. He is off to the doc's tomorrow to get checked out. It will be awful if he has it, I remember getting it at his age and it felt like my thorat was full of glass. I feel bad that I cannot be there to give him a hug.
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