For those that like to keep up with me here is the latest.
I had some lovely surprise visits from Bev and Janet Nye as well as Tina Fowler who had been to clinic. It was so nice to see them. Us MDS patients are pretty good at supporting each other. Thank you for taking the time to catch up.
I’m still not maintaining the feed and as a result am continuously being topped up with various electrolytes. They had hoped to wean the TPN down further but this morning after a long debate with the various specialists they have decided to slow the feed down and increase the TPN. Sigh. There is no chance of me getting out of here while I still need TPN support.
The last lot of blood I had hasn’t lasted long and they have needed to give me another top up. Thank you to the amazing person who donated this little bag of life to me. Without you being willing to have a few moments of discomfort, I would not survive. Your generous gift is gladly received and very much appreciated.
The nurses and doctors and allied healthcare professionals are working really hard to get me back on an even keel. Their kindness and compassion despite the daily challenges is outstanding. While my night nurse was giving me my last lot of medication last night and also hanging a new bag of TPN, he got called to deal with an emergency in the room next door. Between 10 and 2am staff worked tirelessly to save their patient. The stream of doctors, nurses, radiographer, and probably others was endless going past my door. In a crisis you know you are in safe hands with our NHS. Another nurse came from an adjoining ward to finish my medication at 00.45am. It’s good the way the team pulls together at times like that and despite the damage that austerity has done, nurses find their way round the system. You have my respect.
Of course not everything is smooth sailing when you are an in patient. Today I’ve been told that because they have used my ECP line for TPN that it now can’t be used for ECP. Apparently TPN has to be given on a dedicated lumen that cant be shared with anything else because of the infection risk. They are now scratching their heads as to how they are going to sort it. I guess for me it means I may have to put up with being stabbed several times until they get a cannula that will work.
The other irritation is that despite giving them 2 separate samples in different weeks they still need to test for CDif before I can be finally given some medicine to slow my apparently badly inflamed gut. They have tested for loads of other stuff including norovirus but forgot this one. Let’s hope they get the results soon.
Despite these challenges I still think the NHS is one of the greatest achievements that Britain has ever created. We need to work hard to protect it and support the amazing individuals that work in it. I’m not saying the system can’t be improved in places. All things need to be reviewed at times but for the women and men that give their time, talents and professionalism to keep people like me alive and to try and give me back a bit a quality of life - I salute you all. Thank you doesn’t seem to cut it but you know it comes from a very grateful heart. Rebel
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