Photo: Karen’s recent card from some supporters.

Hello Everyone

Karen has now been in Conquest hospital for 1 year and 11 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.

Since Karen’s PICC line was changed on the 11th of August it has worked well for the TPN, IV fluid and IV medications going in, but it has often continued to be difficult to get blood for blood tests from the PICC line. When the nurses could not get blood from it, they would refer to the vascular team for them to try. Since October it has become more difficult and no one has been able to get blood from it since the 12th of November, despite many attempts. The vascular team have had to take blood peripherally from one of Karen’s arms each time instead.

On Monday the 24th of November, after being unable to get blood again from the PICC line, one of the vascular team said that the inside tip of the PICC line might not be in the correct position. He said if it was not in the correct position that there was a risk of thrombosis (blood clot) or infection because of this. He wanted Karen to have a chest x-ray to check the position of the PICC line. He said it could be a portable x-ray - done in Karen’s room. This was to avoid Karen having to be taken to the x-ray department which would have been very difficult for her with the ME and would have made her feel a lot more unwell. Karen and Heather were concerned that the PICC line might not be in the correct position but were relieved that it could be a portable x-ray.

On Tuesday the 25th in the afternoon, Karen had the portable chest x-ray done. A while later, Karen’s gastroenterology consultant came to see Karen. He had reviewed the x-ray with the lead of the vascular team. The consultant said the tip of the PICC line is not as far into the heart as it should be. He said it is still usable at the moment but that it is likely that it will come further out of place and it would mean that it would not be suitable to be used any more. He said the PICC line needs changing soon. In August when the PICC line was put in, it was very difficult to put in and in the radiologists report he said that the next time it needed changing he thought that Karen would need a Hickman line instead. This is an IV line which is placed below the neck or in the chest. Karen will have the Hickman line put in under general anaesthetic (GA) because it would too difficult for Karen to have it done without a GA. It is awful that Karen’s PICC line needs changing so soon after it was last changed.

Karen’s urinary catheter is due to be changed and this will need to be done before the Hickman line is put in. 

For more than 6 months, gastric fluid has been leaking from Karen’s PEG-J site. This burns Karen’s skin around the site, which is very painful for her. The amount of leakage is variable and sometimes the site is worse than others. The gastric fluid particularly leaks more when Karen is more unwell. We have tried various barrier creams etc. which help a bit. At the end of October the site seemed to be infected again, so Karen was started on a course of anti-biotic steroid cream. She had the course of cream for 10 days. It helped the site but the gastric fluid leaking and the problems with the site because of this are on-going.

The work to install Broadband fibre in the hospital has been continuing and sometimes the technicians have been back doing work on this in the ward Karen is in. In November a technician had to come into Karen’s room to thread a cable through the ceiling so this caused more noise and disturbance for Karen.

There have been several emails to and from Karen’s solicitor and East Sussex Healthcare NHS Trusts’ solicitors. This continues to be stressful for us all and is exhausting for Karen.

Karen has had several particularly bad ME dips since our last update, including one recently where she vomited 8 times.

There have been some particularly noisy patients in the ward lately, many of them near to Karen. One of the noisy patients, who was in a room almost opposite Karen, was aggressive and violent. They shouted and fought with the security guards in their room and in the corridor near to Karen’s room. Another particularly noisy patient in that room a while ago, in early September, talked loudly for hours in the mornings then shouted loudly for hours at a time, some of the time in the corridor and also kept repeatedly tapping loudly on the door etc. It is very difficult for Karen when there are noisy patients.

Karen loves to receive post. She receives post from some friends who write to her and occasionally she receives post from supporters who send it to the ward she is on (gastroenterology) at Conquest hospital. Karen very much appreciates receiving the post and it brightens her day. In October she received the lovely card shown on this post. It was a lovely surprise.

Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. It is all much appreciated by us.

Please keep sharing this petition and telling people about Karen’s situation.

Thank you to everyone for your wonderful support.

Best wishes to you all
Karen, Heather & Michael