Thank you for all your messages yesterday. Kit is right - it is so easy to forget how amazing it is to be sitting here on a Saturday morning and not driving into Reading for dialysis and then spending about 6 hours having dialysis -setting up the machine, needling, actually having dialysis, taking out needles, stopping bleeding (sometimes over an hour to do this), and then being driven home. I would then be feeling quite poorly and would spend the rest of the time in bed recovering. And this is life 3 times a week for many, many people. I regularly go back to the unit and see my fellow patients and reflect on what could have been. Even those patients who have a transplant then have to live with the difficulties of anti-suppressant drugs which have many, many side effects and also cope with the fear of rejection all the time. I am so grateful not to be in that position but to be here planning my Saturday. I will never take my life for granted. Each new day is a gift - maybe you feel that a little bit too having known me?
Today - we have begun the day having coffee and chat with Ed before he set of for a day at Lords with some of his family. I am hoping to plant up my hanging basket today - depending on the weather, a trip to see Bluebells (again weather dependent) and lunch at the garden centre with Paul and Chloe (to give Chloe a break from the never ending revision).
My new GP was lovely yesterday - although I think rather overwhelmed by me! It is hard in a short time to give my medical history. In telling her what had gone on I completely forgot the autoimmune part which was very confusing for her when I suddenly said - oh I also have mixed connective tissue disease,with sclerdorema. I could see her brain whizzing away trying to remember anything about scleroderma (she probably has never seen a patient with scleroderma before). We managed to come up with a reasonable plan which I was happy with. I will visit her every 2 months (unless I have any concerns in between) and I will have 6 monthly bloods, again unless I feel unwell or get any bugs when I will have a blood test straight away. I will monitor my blood pressure at home (it was quite high again yesterday) and if it doesn't settle we will have to have another look at my tablets - ho hum! (I already take 3 tablets for my blood pressure not keen to take more) I have added in another tablet with the hope of controlling my morning sickness. Soon I will rattle with all the tablets I take!
I hope you have lovely weekend plans.
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