Hello Everyone,

Karen has now been in hospital for 6½ months.

On the 5th of June we had received a long document from St Marks with responses to Karen’s 1st set of questions that had been sent to them in February. The next day we were told St Marks would be available for a call on the 14th. There would not have been enough time for Karen to have the document read to her and to prepare for the call so we asked for the call to be postponed. On the 11th we were told that the call had been postponed until Tuesday the 2nd of July.

After St Marks asked us if they had been sent Karen’s 2nd set of questions, we sent them a letter by email on the 10th of June and told them they had been sent them. Since then, St Marks have not replied to us and still have not sent us responses to Karen’s 2nd set of questions which they were sent in early April.

Unfortunately, in the last few weeks Karen has been having a lot of problems with her tubes and with other things. On Wednesday the 12th of June one of the lumens on Karen’s PICC line was leaking, The TPN lumen was ok so could still be used but the other lumen could not be, so that evening she had to have an anaesthetist to put in a cannula so that I/V drugs and fluids could be given. It tissued (the I/V fluid was going into the tissues instead of the vein) after 16 hours. The same anaesthetist came and put a new cannula in. This one tissued after 17 hours. The PICC line wasn’t replaced until the afternoon on Friday the 14th. It took 1¼ hours. Karen missed her 9:30am and 1:30pm anti-emetics (anti-sickness) medication because she did not have I/V access. The lead member of the Vascular team put in the PICC line. He had to reuse the original PICC line site on the left arm to put in a guide wire and thread a new PICC line over it. It was a painful ordeal for Karen despite extra pain-killer being given prior to it and was more difficult for Karen without her usual anti-emetics.

On the 7th of June Karen felt a strange sensation inside of her PEG-J site. In the next few days the tube was protruding more than usual. On Thursday the 13th, when the balloon that holds the tube in place was routinely checked, there was no water in it which showed that it had burst. Later we were told the doctors had said to stop using the tube as it was unstable.

Karen’s PEG-J site infection in May was slow to improve so the I/V anti-biotic course was extended to 10 days. However, the site has become very painful again recently.

In the last 2½ weeks Karen has been having intermittent problems with drainage from her urinary catheter which cause her a lot of discomfort and loss of sleep. On Friday it will have been in situ for 10 weeks - so it is due to be changed. The process of trying to arrange for a urology consultant to come to Conquest Hospital and change it is in progress.

On Saturday the 22nd Karen got a sore throat and started another ME dip (flare-up). The heat wave last week also made her feel worse. Karen is continuing to be more unwell than usual as she has a virus and also because of several other things including that the ward noise has been particularly bad in the last week and a ½ and is still continuing.

All of the problems with the tubes etc have been exhausting and time-consuming for Karen. We have been trying to get the call with St Marks postponed as Karen has not been able to prepare because of the things that have been happening in the last few weeks, because she is too unwell and because the catheter and J-tube need changing. 

It’s very stressful for us all trying to fit in 2 tube changes as well as Karen needing to prepare her responses for the St Marks call and trying to fit in the call with St Marks, all bearing in mind Karen’s very severe ME and Karen currently still having a virus.

Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to those of you who have left supportive comments and/or chipped in to promote the petition. It is all much appreciated by us.

Please continue to tell people about this petition and continue to share it on-line.

Best wishes to you all.
Karen, Heather & Michael